Review ~ Empatica Embrace

Two years ago my husband bought me the empatica embrace watch as a Christmas present. It was a sort of crowdfunding scheme so it wasn’t as straight forward as buy the item and receive it in the post a couple of days later.  The plan was for it to be released in October 2015 so there was quite a wait and obviously the risk that it might never happen.  I read a lot about the watch and what they were trying to achieve.  To produce a product which would alert a carer to a seizure wherever the person was and also monitor stress levels (a particular trigger for me and I feel many people with epilepsy but something we can all develop strategies to have some control over), while also be comfortable to wear and look good at an affordable cost all made me feel this was a good thing to take a risk to support.

Two years ago...

Two years ago I was in a very different place with my epilepsy, I had had two tonic clonic seizures in three months, we had decided lamotrigine wasn’t going to be the drug to control my epilepsy and so I was weaning onto keppra.  We were also thinking about a second baby and not long after ordering the embrace we found out I was expecting in October 2015 so we were hopeful the embrace would arrive on time for baby’s arrival and a period where seizures are always more likely and with a vulnerable baby having an alarm always helps everyone’s confidence.

Unfortunately as with all the best made plans there were problems with development of the embrace, however this is a risk you take when you crowdfund something, and empatica did keep us up to date with what was going on throughout so I cannot fault them.  We carried on with our rather frumpy (and extremely expensive) alarm which only worked in the house.  By some miracle we started to realise that the leveteracitam seemed to be working and after 10 years of seizures, it appeared I was seizure free.

Celebrating one year seizure free

So how would any normal person celebrate a year’s seizure freedom but by signing up for the London Marathon!  I was a keen runner through school, it was my way of getting away from everything, however it was while running that my seizures began, in fact three of my first four seizures happened during or shortly after a training session.  So running the marathon seemed like the perfect way to show epilepsy that I had won and if I could raise a load of money for others with epilepsy in the process even better.

So I started running, I have two children so my main training time was after giving Benji his last feed so I would usually leave the house at 8pm, as my distances built I wouldn’t be getting home until 10pm and our strategy for knowing whether or not I had had a seizure… figure out how long the run should take and if I am not back by that time send a search party out… that could mean me lying there for 2 hours!  In the long summer days this worry was quite easy to push to the back of my mind I am not so sure it was so easy for my poor husband sitting at home waiting for me.

Introducing the embrace epilepsy monitor

But then autumn arrived, the cold, dark evenings set in and I started running in the dark… suddenly the worry of having a seizure and not being found for hours became a little more real and running became a little less appealing… but then what arrived… yes my embrace watch.

I cannot explain how excited I was, it turned up in an attractive package, and it looked amazing, not like a medical item but a stylish watch.  My kids loved the flashing lights and I couldn’t wait to set it up.  Now I am not going to lie set up took a while… however I am fairly sure that was my own fault… my phone memory was full, it hadn’t updated for months and hardly unsurprisingly the embrace wouldn’t connect. So I started clearing out my phone, running updates and then once that was done the embrace connected no problem.

All I can say is I love the embrace, it is comfortable, to the point where I don’t notice it when I sleep at night, I have a fit bit too and always found that quite uncomfortable to sleep in.  It looks good, no one has asked me ’what is that thing on my wrist?’ With my old alarm which looked like a lump of plastic anyone who popped round for a cup of tea would ask about it. I presume everyone just thinks it is a watch and the best bit is that it is a watch and I haven’t been able to wear a watch ever because the batteries die so quickly with me.

Seizure alert function

So the alarm function, as I said I haven’t had a convulsive seizure for over two years so I am unlikely to be able to test whether it actually works when you have a seizure.  However I have had a few false alarms. All have been for activities which I would say are similar to having a seizure so I think that shows it works rather than being a downside of the watch, my old alarm went off a lot more than this so I feel it is pretty accurate.

One false alarm was when I was scrubbing my little girls car seat and when it also went off while brushing my teeth I swapped it onto my non-dominant hand and since then there has only been one time it has alarmed and that was pushing my buggy along a very bumpy path… which pretty much makes your arm shake like it would during a seizure.

The one negative with the watch is that it needs to be charged for about an hour or so every day, this can be done from a computer or charger with a USB connection, I have started doing this in the evening at home or while at my desk if I am working so at a time when there are other people around.  There is also the fact that to contact family members there is going to be a monthly cost which as of yet is still to be announced, but I am really hoping it won't be too much.

The major test... running

Next was the real test… running… so on Tuesday I set off on my run, would it alarm? Would it stay connected to my phone? Well the answer is no it didn’t alarm and yes it did stay connected and the peace of mind this brings to me and my family is immense.  Over the next 6 months I am going to be scaling up my running in preparation for my marathon attempt.  I am going to be running in the dark for long periods of time on my own, and finally we have a full proof plan.  If I have a seizure the embrace will let my husband know and he can locate me with a simple find a friend location app.  That peace of mind is priceless and will help to make the next six months of training a lot less risky.

The final test was when I got home I had a shower wearing the embrace… a little scared of mixing water and electrics as I have put my phone in the wash many times. The embrace states it can be worn in the shower, rain and even for swimming (just not in salt water) and you know what it was absolutely fine after a shower.  Which is an amazing step forward as my old alarm was not water resistant so I was vulnerable when in the shower or even washing up as I was worried it would get splashed.

Stress monitoring

Finally the embrace also comes with the ‘Mate’ app, this is the basis of the stress monitoring system.  It is in the very early stages and currently just measures quality and quantity of sleep and basic activity information but even that is quite interesting to look at.  It is quite crude and the one thing I would say is that the step counter isn’t very accurate in day to day activities but seems to become more accurate if you go for a run.  However I can definitely see where the app is headed and I am really excited for future updates.  I hope that one day it will allow me to monitor my stress levels, to develop mindfulness strategies to control them, as I feel controlling these is key for me in remaining seizure free long term.

I can’t thank the empatica team enough for this amazing product, it is helping me to feel more confident when looking after my kids on my own or while out running and training for the marathon. I really do feel this is going to be life changing for so many people living with epilepsy.

To find out more about the embrace watch visit their website here.

Auction of Promises ~ Saturday 29th October 2016

Next year I am running the Virgin London Marathon to raise money for Epilepsy Action who help support the 600,000 people in the UK living with epilepsy.  They have helped me immensely over the last 12 years and I couldn't imagine running for anyone else.  This is a huge challenge for me as my seizures started while running but I am determined to beat epilepsy and complete my life's dream of running a marathon.  I am holding an auction of promises to help meet my fundraising target of £2000.  It would be fantastic if you could come along to the event and bring as many friend's as possible, alternatively if you can't make it we have some auction items to bid on before the event so please drop me an email with your bid to claircaxton@hotmail.com

Date: Saturday 29th October 2016
Time: 2pm - 4pm
Venue: Horizon, Assembly Walk, Carshalton, Surrey, SM5 1JH

Items in the auction open for pre-bids (send bid by email to claircaxton@hotmail.com)

2 hours in a professional recording studio with an award winning producer and leaving with a professional quality recording on CD or online
CV and interview advice by a professional recruitment consultant
Horse transport (up to 100miles) and groom for a day (excluding plating tails)
Linked in profile copywrite
5 hours of babysitting in the Redhill/Reigate area
Improvers ski lesson by professional ski instructor (at Brentwood ski slope, transport can be included)
3 hours of base guitar lessons
Cooking tutorial from a professional chef culminating in a restaurant quality 3 course meal in your own home
An amazing made to order cake from Little Blossoms Cakery (truly works of art)
Vintage China for an event for 30 people perfect for a baby shower or hen party
Fudge factory experience
Pony experience - spend half a day learning to care for and then ride a pony (children under 8 years)

Auction items available on the day only:

Transport to and from the airport
Beginners knitting lesson
Family meal including desert delivered hot to your door
1 to 1 make up lesson by professional make up artist
Juggling lesson
2 hours of ironing
Kids rainy day craft box
frozen slow cooker throw bags
2 hours of gardening
Pet portrait
Meal for four people cooked in your own home
5 beginner piano lessons

We are also going to have a raffle on the day and raffle prizes so far include:

Family ticket to Godstone Farm
Afternoon tea for 2 at Edibles in Banstead
2 person ticket to Bockett's Farm
Garson's Farm gift voucher
Woodcote Green garden centre gift voucher
Free bowling at Tolworth Bowl
Mini canvas by the talented artist Jenny Greenland
£10 dry cleaning voucher for Banstead
1/2 case of wine
30 minute go karting session in Crawley
And much much more...

Also on the day there will a cake sale with tea and coffee, crafts for the children, face painting and Riley will be singing a song to make everyone smile!

If you aren't able to come along to the event but would still like to support my marathon attempt anything you can donate would be greatly appreciated.  My just giving page is:

www.justgiving.com/clair-cobbold

Medication in pregnancy ~ does the guilt ever go?

When you are pregnant you want to do everything you can to protect your unborn baby.  You watch what you eat and drink, giving up things you loved before just in case it impacts on the life you are growing inside you.  But for those of us who have no choice but to take medication during pregnancy it is a huge weight on our mind throughout those 9 months and beyond.

Pregnancy and the early days

That first scan is so scary, but then so is every scan after that, what if they find something, what if the drugs have affected the baby, I think it’s the only time in life where you want your child to be completely average and I felt blessed that both mine were.

Then they are born and the relief that both my babies we’re ok was huge.  The first few days with Benji were a worry, he didn’t poo straight away and the doctor was questioning whether his digestive tract had developed correctly.  We heard her making irate phone calls to the consultant and the whole time I was sat there thinking maybe this is because I took Keppra in pregnancy.  It turns out he is fine but the worry at the time was very real.

So once they are home I though the guilt would pass, we have two healthy children we could get on with life.

Small problems start to show

But then we noticed Riley’s eyes would sometimes roll outwards, to begin with I thought I was imagining it but by the time she was two others started to notice it too. It turns out she has a divergent squint, she controls it really well and I am so proud of how grown up she is when she goes to the hospital and has her eyes tested.  But in the back of my mind I question why does she have this problem, could it be the lamotrigine I took in pregnancy?  She may need surgery in the future, it’s not a problem that is likely to go away and I worry that other children will notice her eyes and bully her for it.

Then there are her little toes, they are slightly deformed, they are slightly high on her foot and the nails are small and impossible to cut. I have mentioned it to the doctor and we were told they may well bother her when she gets older and require a small surgery to correct them.  But a few weeks ago Riley asked me why her toes are funny, it was because Benji’s are normal so when I cut their nails together I can do his really quickly but with hers I have to get clippers out and try to pull the nail back to cut them and it hurts her.  She asked why her nails were so hard to cut when Benji’s toes were so much smaller and yet his nails were easy to cut…

Finally there is potty training, this has been a complete nightmare, the hardest part of parenting so far for us… we have tried everything.  We have used so many different reward charts, we have got her to clean up the mess, we have used a wobble watch to remind her to use the toilet, we have given her big drinks to try to stretch her bladder and still we have regular accidents.

Don’t get me wrong things are improving, we definitely have less accidents now than 18 months ago but we struggle to go more than 2-3 days without an accident and some days we will have loads.  The health visitors are all out of ideas, nursery are all out of ideas and for a child so bright and articulate it seems strange she can’t grasp a simple concept of using the toilet.

At first it was really hard seeing all her friends just getting it.   But it has gone on for so long now I have learnt to accept it but it is still hard when there are children so much younger than Riley who are successfully potty trained.

There is also so little support out there when you are struggling.  I had to break down in floods of tears to the health visitor to even see them.  We had a scan done and it showed her kidneys are normal but it would appear her bladder is small.  We don’t know why yet but we have finally got a referral to the paediatric urologist, it has taken a long time and a lot of heart ache to get there.  And now I wonder could it be the medication I took in pregnancy which is behind this problem.

Could it be the medication?

The truth is we will probably never know whether these problems are caused by the lamotrigine because while data is collected on major birth defects at birth, small problems like this are not recorded anywhere and without the large data sets you can never tell whether it’s just unlucky that she has these problems or whether it’s due to the drugs.

Of course these little problems wouldn’t have stopped me having a baby because I was taking epilepsy drugs, I wouldn’t change Riley for the world.  I suppose it’s more the guilt that is linked with them, I blame myself for Riley’s problems.  Because no one can tell me either way whether it’s the drugs I blame myself for the decisions I made, like to up my lamotrigine dose during pregnancy because my levels dropped.

It’s also a funny situation because I feel like because Riley and Benji were exposed to different drugs during my pregnancy and Benji doesn’t seem to have these problems that if I had taken the plunge and tried Keppra sooner Riley might not have these problems.  I chose not to try Keppra sooner because I was worried about it effecting my mood because of all the things I had read about it so I feel guilty for that.

What needs to change?

I suppose what I am trying to say is that more needs to be done to record the long term effects of medication on children exposed to it in uterus. Drug companies need to take more responsibility for their medications so women can have all the facts available to them.  I wouldn’t have chosen not to have children because of these small problems but now I feel guilty for every problem my children have, it would be good to know which are linked to the medications and which aren’t and just to receive better support and understanding from health professionals.

There is so much information on the risks of smoking and alcohol in pregnancy and at the end of the day there is no need for women to smoke and drink in pregnancy (and the risks seem pretty obvious) yet there is so much data on the risks.  But for medications that many women have no choice but to risk in pregnancy the data just isn’t being collected and that seems wrong somehow.

Update on life!

I haven’t written anything for a while and yet so much has been happening, and I guess that is the point of this blog.  It’s been a very busy few weeks, I have returned to work, Benji has started nursery and we finally got a referral to the paediatric urologist for Riley. Meanwhile I have been continuing the running training for the marathon next year and feeling the pressure of needing to begin to fundraise.
I would love to say that I have coped with all this fantastically well, and I hope that to the outside world it seems I have, but on the inside I have been really struggling and at one point was right on the edge so here’s the honest truth condensed down to one blog.

Benji’s growing independence

Benji is a star, so laid back, so easy and I feel totally blessed to have him.  He has started at nursery which I have to say I was really nervous about as it took Riley so long to settle and while I can’t say he loves it, I feel like he has accepted it and so I don’t feel too guilty.  He has also just started to crawl and is into everything! 

Yesterday I noticed four new teeth seem to have sprouted from nowhere and he hasn’t really made a fuss.  We’ve had the starting nursery sickness to contend with as well, lots of new bugs so last week he had a temperature and last night I was clearing up sick!  But all in all he is doing really well and growing up so fast!

Riley on the road to school

Riley starts school in a matter of weeks, she is excited and can’t wait.  She has grown up so much and while she has the odd difficult moment she is a joy to spend time with, she cares so much about others and is funny and her character is really starting to shine through.  That’s why the next blog I am going to write is going to be a tough one to write, there are a few little things which she has to deal with that I just wonder, ‘are they linked to the lamotrigine I took in pregnancy?’ but that is a long story and will be the basis of my next blog.

Work and run

So my seizures remain controlled with the Keppra which to me is a miracle, no focal seizures for coming 20 months, no tonic-clonics for 28 months! I have my driving licence back, my confidence is growing with the kids and I feel great.  I am now back at work, at a desk all day, and I find that quite hard but it has to be done.  I am also doing great on my marathon training, now running 5k well within 30 minutes 2 times a week with longer runs as well, so I am now up to running 15k.  With my first half marathon in 5 weeks’ time I feel like I have achieved a lot in the last few months and overcome a massive hurdle.

Anxiety attacks

So all this change has come at a cost, Keppra has been the drug to control my seizures, I feel so blessed for that, but it hasn’t been plain sailing that’s for sure. I can’t say whether it is the Keppra itself or the fact that for 10 years I was on lamotrigine, a mood stabiliser and maybe I just got used to that but lets face it all these drugs change the way our brains work, they control the activity going on in there. 

There is no getting away from the fact that since I made the change from Lamotrigine to Keppra I have had to work a lot harder at finding strategies to regulate my mood.  When times get tough like that have in the past few weeks I start to feel myself falling apart.

So I know that I have been more snappy towards Rich and I am so glad that he puts up with me, I can’t thank him enough for all the support he give me.  I have found that running really helps me to regulate my mood, it gives me some me time away from the kids and allows me to reset.  But the biggest challenge over the last month has been my anxiety. 

I started waking in the night having anxiety attacks, with my heart racing and pounding in my head.  I used to get this when I was first diagnosed with epilepsy and all I can say is it makes going to bed really scary.  So after three nights of this happening I started to feel the anxiety growing in the day, then one day I thought it was going to happen while I was out at the park dealing with the kids, I panicked and started to leave the situation and luckily calmed down. 

But that episode made me realise everything had got too much for me and I needed a coping strategy.  So cue mindfulness, I had let meditation slip over the last few months.  As things get busy finding the time to actually meditate seems to fall to the bottom of the pile.  But after these anxiety attacks I started prioritising it before bed, and wow I can’t explain how quickly I felt more in control. 

Since starting 30 minutes of meditation each day I haven’t had any more anxiety attacks, day or night and just feel able to cope again.  I have also found a great running meditation which kills two birds with one stone! Yes it another thing which takes up my time, but it really does improve my quality of life.

My 2017 London Marathon Challenge really begins!

With my place confirmed on the Epilepsy Action London Marathon team 2017 now seems to be a good time a step up both my training and fundraising as both are a huge challenge but one I am looking forward to.

So I want to start by sharing why running the London Marathon is such a huge challenge for me. I have always wanted to run the marathon I guess it's one of my biggest life goals. At school I did long distance running, something very few people were keen on! I ran 1500m at all the school competitions not because I was an amazing runner but more because noone else wanted to and I used to run 10k in sub 1 hour so I wasn't a bad runner and I enjoyed it!

However I had my first big tonic-clonic seizure, 12 years ago, walking home after a training run, I had my second seizure while running with my athletics club and I had my forth seizure on a treadmill. I quickly lost confidence in running, put the challenge of running a marathon to the back of my mind along with the idea of driving. That diagnosis of epilepsy really knocked my confidence but it was Epilepsy Action who gave me hope that I could live a full life.

In the past 10 years my volunteering with Epilepsy Action has given me a purpose, I feel like my epilepsy diagnosis has given me an opportunity to help others, that something positive has come from it.

By giving epilepsy presentations to care providers, businesses and other groups I have helped make our world a more understanding place for people with epilepsy. By helping at events I have met so many amazing people effected by epilepsy, their stories have inspired me to do more with my life and I hope my story has helped others to. By getting involved in campaigning I hope I have helped make a small change to the bigger system that means others with epilepsy won't have to go through some of the more negative experiences I have had to fight my way through.

So now I want to achieve the life goal epilepsy made me place on the shelf so many years ago, I am going to run the 2017 London Marathon and I couldn't imagine running it for anyone else other than Epilepsy Action.

Running the marathon is a big enough challenge in itself but the fundraising goal I have is also a pretty big goal for me too, and something I have never really done before.

So I ask you my friends to help me with this, it doesn't have to be by giving money (although if you can spare a little that would be amazing, you can visit my just giving page here) just words of encouragement to get out there running when it's cold and wet would be amazing. I'll also be holding cake sales and hopefully an auction of promises so it would be great to see you at them, just watch this space.

So the challenge begins, here we go!

SUDEP ~ the other side of the Epilim debate

So a few weeks ago I was invited along to share my story at the Epilepsy Action pregnancy symposium in Wales. It was an amazing opportunity for me and I feel my story really helped highlight the need for better support for women with epilepsy throughout pregnancy.

It was fantastic to see so many health professionals from across Wales interested in making women with epilepsy have more positive birth experiences. I was really surprised to see what a good level of specialist support they seem to have across Wales with epilepsy nurses attending anti natal clinics to give support. Yet in our area just South of London there was next to no specialist input.

But the day also highlighted to me a darker side of epilepsy and I have been umming and arghing about how to write this post. Reading this post about the importance of bringing epilepsy and death out of the shadows has kick started me into writing this.

Risks of Epilim (Sodium Valporate)

We have all heard the awful stories of women having been on Epilim during pregnancy and not being informed of the risks to their baby. Of the babies born with birth defects and neurodevelopmental problems.  The day really did highlight the importance of informing women of these risks which is brilliant but it also addressed the other side of the coin... the fact that epilepsy can kill.

The reason I am writing this is because women should be given all the information when making a choice about medication during pregnancy.

I have heard people say Epilim should be band in women of child baring age but this is why it shouldn't, because every woman should be given all the information then given specialist support to come to the right decision for them.

Gender gap in treatment of generalised epilepsy

Epilim is the most effective treatment for generalised epilepsy (things like Juvenile Myoclonic Epilepsy). If a man walks into an epilepsy clinic with a generalised epilepsy syndrome he'd be put on Epilim as a first line drug. If it's a young girl or women they would try other drugs, drugs less likely to work, it turns out keppra is one of the most effective drugs aside of Epilim so it's very positive that it is appearing to be fairly safe in pregnancy.

Real Story ~ to raise awareness

They told a story which really hit home to me of a women who had been on Epilim for JME throughout childhood and it had controlled her seizures completely. She then wanted to start a family and made the difficult decision to change to what was then seen as the safest medication in pregnancy, lamotrigine. She started to have a few seizures again but got through the pregnancy and had a healthy baby.

After the birth she saw her neurologist and they discussed if she wanted to go back on Epilim but because she wanted a second child she decided to stay on Lamotrigine and live with the seizures. A few months later her husband found her blue on the bathroom floor, he was unable to resuscitate her, at her inquest the family were told she had died from SUDEP.

SUDEP ~ the information everyone should have

Seizure control is the best way to reduce SUDEP so sadly if this woman had chosen to restart Epilim her child would probably still have a mother. It's a horrible truth but one that is not spoken about enough.

The risk of SUDEP increases in the first year after birth, it makes sense and yet I never really considered it. Lack of sleep, hormonal changes, forgetting medication as we are running around after our little person, all increase our risk of seizures and thus our risk of SUDEP.

We say women should have all the information about epilepsy drugs in pregnancy to make a decision and I think that is totally right.  I just wonder whether this women was given all the information about SUDEP to add into that decision.

Epilim does carry a fairly substantial risk to a baby in pregnancy (you can find more information here) but uncontrolled epilepsy increases the mothers risk of SUDEP and that needs to be considered too (you can find more information on SUDEP here).

Lets face it not all women want to have children, women may be happy to take the risk of Epilim or maybe adoption is a better option for them but at the end of the day what women need is ALL the information and a supportive knowledgeable health professional to discuss it with so they can make there own informed decision about their health and the health of their baby.

Epilepsy is a difficult condition to get your head around in fact when a group of health professionals were asked whether they would rather have a diagnosis of epilepsy, diabetes or asthma, epilepsy was the least popular and yet there is an 70% chance that by taking a tablet twice a day you will never have another seizure again... but maybe it's all these extremely difficult topics that the condition throws up because at the end of the day weighing up your own risk of death against your babies risk of being harmed is a horrible and really tough decision to make.

We are amazing women, fighting tough battles, we deserve all the information and a supportive team of health professionals around us. Let's fight for that together.

It's National Epilepsy Week ~ let's get talking about epilepsy

So this week is National Epilepsy Week and a survey by Epilepsy Action shows many people with epilepsy still fear discrimination and are worried about talking about their epilepsy.

So I was thinking wouldn't it be great if we could use this week to start turning that around. How? By sharing our own stories of epilepsy, showing people that yes Epilepsy can be scary and unpredictable but we all battle through it and come out stronger and more reliable people, better partners, children, parents, friends and employees because we have been through hell and just got on with it, it may not feel like that on the hard days but we are all amazing epilepsy warriors.

So here goes, my story, I would love it if others shared there own stories in the comments, doesn't have to be pregnancy related just show the world we are stronger than epilepsy.

I was diagnosed with epilepsy 12 years ago aged just 19 and around the time I stated university. When I was first diagnosed I was lost, scared and I felt my whole life hinged on becoming seizure free, like everything was put on hold waiting for that to happen. Seizures were so unpredictable, with no warnings and knocking me out for days, how could I function like that?

There were a few periods where it looked like it would happen, months with no tonic clonic seizures and then bam a seizure would happen out of the blue. It was like it was teasing me. There have been some dark days where epilepsy definitely pushed ahead in the battle.

Eventually after 6 years of these intermittent tonic clonic seizures I found the strength to challenge my neurologist about why it wasn't going away. His response of well that's just how it is  wasn't enough for me so I pushed to see an epilepsy nurse and got refered to London.

Finally I saw a doctor who really listened to me. She did more tests and re diagnosed me with temperal lobe epilepsy and said she felt I was having focal seizures. Suddenly a reality hit... I hadn't been seizure free for months ever, these little focal seizures had been there the whole time I just didn't really link the two.

With a proper diagnosis I started talking to other people with the same type of epilepsy and other professionals and it became clear that while the seizure frequency tends to be relatively low seizure freedom can be hard to get especially after so much time. I then I started to realise I couldn't continue to put my life on hold waiting for seizure freedom. I needed to start living life with seizures.

So I started looking for ways to cope with the anxiety I felt from the unpredictability of seizures. I enrolled on the expert patient programme and looked into mindfulness, both helped me come up with strategies to manage my anxiety.

Then I started to live life, finding a job my epilepsy didn't effect so I could give it my all, having two amazing children, riding my horse, skiing in America and getting out running again. I didn't let epilepsy win.

So 12 years after my diagnosis I am in fact 18 months completely seizure free... it is a miracle and yet not a miracle I needed to live life. People say you must be so pleased, and I smile and say yes I am. But am I pleased? Of course I am happy but I had already accepted a life with seizures in order to make sure I didn't miss out on living life so being seizure free I don't like to think about too much because if I do have a seizure again I don't want to feel the incredible disappointment I have so many times before - I don't want to miss out on life because of it.

I guess what I am trying to say is don't let epilepsy win. Have hope things will improve but also find a way to live in the worst times otherwise we miss out on so much.

Sending lots of love to all my fellow epilepsy warriors and their families and friends who stand by them, hope to read your story soon xxx