Wednesday, 29 June 2016

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!

Wednesday, 18 May 2016

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.

Monday, 16 May 2016

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

Wednesday, 30 March 2016

All Wales Epilepsy and Pregnancy Symposium, Cardiff ~ Wednesday 20th April 2016

This looks like a fantastic event for health professionals and will hopefully help build understanding of epilepsy and pregnancy and what extra care women with epilepsy need on their journey.

I also feel honoured that I have been invited along to the day to share my own experiences with health professionals and I'm really looking forward to it.

The day is going to look at:

Epilepsy, diagnosis and management, seizure types, treatment

Teratogenicity of anti epileptic drugs, valproate and learning disability

Pre-conceptual counselling, contraception and fertility

Management of pregnant women with epilepsy - a confidential enquiry

Epilepsy Care in Pregnancy

UK Epilepsy and Pregnancy Register

Ante natal care

Labour, delivery and post delivery

Safety issues

Personal experience of epilepsy and pregnancy

So looks like an excellent day. If you are a health professional and would like to attend you can find out more about the event and book your free place here.

I'll be writing about the event afterwards so watch this space!

Saturday, 26 March 2016

Purple Day 2016 ~ Epilepsy fighters

Today is purple day and a great chance to raise some awareness about epilepsy and what living with it really means.

Epilepsy is so much more than just seizures and it's impact is not just on the person with epilepsy but everyone who loves that person to.

It's the unpredictability of it, yes seizures are awful, they knock you back and make you feel awful for hours and even days.

But it's the fact you never know when a seizure might happen that means you are always on edge, constantly risk assessing.

The longer you go without a seizure the more your confidence grows but then if epilepsy does hit again it knocks all that back.

So many times I have thought I had won only to be knocked back again by epilepsy. But epilepsy will never win I won't let it stop me living my life, having the family I want, riding my horse, skiing.

This purple day I am seizure free for 16 months and driving again. I have 2 beautiful children and feel confident again I hope epilepsy doesn't steal that confidence but you know what if it does I will fight back again.

Happy Purple Day to all those fighting epilepsy and all those supporting us in that fight.

Share your stories proudly and build awareness.

Saturday, 19 March 2016

Care in a perfect world ~ Epilepsy Blog Relay

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!

I 've been thinking long and hard about what to write about for the blog relay and I've decided following on from the Royal College of Midwives awards last week I'm going to look at how care of women with epilepsy especially through pregnancy and early motherhood needs to improve.
 
Becoming a mother is a huge decision for anyone, it's a daunting prospect the idea of bringing a tiny person whose completely reliant on you into the world and helping them to become a valued member of society.
 
Then add epilepsy to the mix which brings with it so many additional complications, the risks that come with the epilepsy medication, the fact no matter how well controlled your seizures are you are labelled high risk and the fact you are going to be looking after someone so vulnerable while also suffering a condition which is so unpredictable. It's a scary thing.
 
So you'd think that with so many issues to think about there would be good support systems for women with epilepsy but unfortunately often there is very little support.  Most women are being looked after by a general neurologist who probably doesn't even specialise in epilepsy and who won't be able to see them in months. There are areas of the country where there aren't epilepsy nurses and with only one epilepsy midwife in the whole of England paid for just 6.5 hours a week who can women with epilepsy talk to about starting a family? 
 
It leaves women with epilepsy pretty alone in this scary situation and so they turn to google and online forums, which are a great resource to share experiences but one which should be backed up with real life knowledgeable support. 
 
It's little wonder I speak to women and they are really frightened to start a family, they are being told about the risks of their drugs on babies with little support in all the other issues epilepsy places on pregnancy. We need better support for women or we're going to be going back to a time where women with epilepsy feel they can't have a family due to their condition which is not the case.
 
Risks of medication
 
At the moment there is quite a lot of media out there about the risks of  epilepsy medication in pregnancy and rightly so. Women should be given ALL the facts and the fact so many women were not told about the risks of their drugs and the impact they could have on their unborn child is disgusting.
 
But I fear things maybe going too far the other way, without the right support this information is extremely frightening for women.  I have spoken to women on some of the safer medications who are terrified and considering not having a family because of the risk and you ask them who they have spoken to about it and it's no one. They have read the risks online and have tried to see their neurologist but have to wait months for an appointment.
 
Please don't get me wrong women should be given the facts about there medication and the impact on an unborn baby but they should also be able to talk their worries through with someone so they can weigh up the joys of childhood with the risks of the medication and ways to reduce the risks.

You can find out more about the risks of epilepsy medications here.
 
The pitfalls of being labelled 'high risk'
 
Having epilepsy automatically makes you a 'high risk' pregnancy whether you are having convulsive seizures daily or have been fully controlled for years.  But what does 'high risk' mean? Well it seems to vary greatly from area to area. Some people have great joined up care between their epilepsy team and obstetric team, unfortunately I think usually this doesn't happen. 
 
It certainly didn't for me in my first pregnancy. I was stuck in the high risk clinic seeing an obstetric registrar whose knowledge of epilepsy was limited.  I went along with everything they said with very limited birth choices and it lead to a fairly traumatic birth experience.
 
When it came to my second pregnancy I really had to fight to get birth choices as I wanted things to be different, I wanted a natural birth with minimal intervention.  My epilepsy was well controlled and yet because I was considered high risk I had to fight to have any choice in my birth, luckily I had an epilepsy midwife backing me up. 
 
I was told I couldn't be in the birth unit because I was 'high risk' even though my pregnancy had been completely straight forward, my epilepsy had been completely controlled and the birth unit was in the same building as the main ward.  For me stress and anxiety trigger my seizures so being in a more homely environment would have been beneficial for me but it was a definite no.  Instead I chose to stay at home as long as possible and arrived at the hospital fully dilated ready to push.  Benji arrived 42 minutes after arriving at the hospital.  It was an amazing birth experience because I was in control the whole time.
 
I feel women with epilepsy need to be treated as individual's and put in control of their care not just labelled high risk and put in a system which doesn't really meet there needs.

Women need more support after the birth

There are many additional issues women with epilepsy face following birth.  The additional issues around looking after a baby when you have epilepsy, weighing up putting in place safety features with just being a mum.  Breastfeeding while on anti epileptic medications and looking out for side effects in the baby.  Epilepsy medication levels varying following birth and side effects these may cause.  The issues around contraception and how epilepsy medication impacts on this.  These are all important issues to consider before the birth but also which women need ongoing support with after the birth.

Epilepsy Action have some great resources to help give women with epilepsy lots of information throughout their pregnancy journey here.

So what would I like to see in the perfect world?  I hope that every women with epilepsy is seen as an individual and given support and information from health professionals with specialist epilepsy knowledge so that rather than just being labelled 'high risk' they are supported to take control of their birth experience. 

Because I know from experience when you have a condition like epilepsy which takes so much control away from you by getting the right support and being given back as much control as possible it makes your birth experience so much more positive.

 
NEXT UP: Be sure to check out the next post tomorrow at Emily's Epileptic Days for more on Epilepsy Awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com/epilepsy-blog-relay.

Be sure to check out the Epilepsy Blog Relay Thunderclap to raise epilepsy awareness. And don’t miss your chance to connect with bloggers on the #LivingWellChat on March 31 at 7PM ET.

Saturday, 12 March 2016

Epilepsy shone at the RCM awards this week

As the previous blog explained we nominated Kim Morley the epilepsy midwife who helped to give us such a positive birth experience with Benji for Emma's Diary Mum's Midwife of the Year.


Well Tuesday was the big day and we went up to London to find out who would win overall.  It was such a lovely day and so great to catch up with Kim again and for her to finally meet Benji.

 
Epilepsy Action's HealthE Mums-to-be campaign was nominated for the Charity Initiative award and I am so happy to say they won.  Two of the lovely people from Epilepsy Action went up to receive the award and Kim and myself joined them as we both worked on the project.  They also won £2000 to put towards future campaigns which I am sure they will put to great use, I would really love to see a campaign around parenting with epilepsy as it holds a lot of challenges but we will see.


 
Then  all the regional Mum's midwife of the year winners went up on stage, it was pretty nerve wracking but Benji was a star and it was so lovely to see Kim receive her award and our way of saying thank you to her.  Then came the moment they announced the overall winner and it was Kim, it was an amazing feeling to see Kim get the recognition she so deserves but also to highlight the need for better care for women with epilepsy.

 
 
We then had to be interviewed which was again quite nerve wracking although I'm sure far more so for Kim.

 
We then also found out that Kim was going to talk on Radio 4s Women's Hour the next day which was a fantastic opportunity.  I think she did an amazing job to fit such a huge topic into a 5 minute interview slot and she spoke so passionately.  If you would like to listen to it you can find the pod cast here.

I really hope that this opens up an opportunity to highlight the need for better care for women with epilepsy during pregnancy across the board, it's about so much more than the risks of the medications, it's all the other factors at play both medical, social and psychological and women just don't get the support they need.  Anyway I will not go on to much about that now as I am planning to write about that for my blog for the epilepsy blog relay on 19th March so watch this space.

But instead I will add some links to stories covering Kims success.


Epilepsy nurse Kim Morley revealed as ‘mums’ midwife of the year’ - Nursing Times

Mums’ Midwife of the Year 2016 — We Meet The Winner - Mum's in the know

Epilepsy Action’s HealthE mum-to-be campaign and epilepsy specialist midwife Kim Morley win big at RCM awards - Epilepsy Action

England's only epilepsy specialist midwife honoured as Midwife of the Year 2016 - Epilepsy Society