Thursday 23 November 2017

Anxiety, Mindfulness and Me

This blog was written for the Living Well With Epilepsy Blog Relay, November 2017.

So I have been battling another one of my demons recently, anxiety... I have always been quite an anxious person, always worrying a lot about everything but it wasn't until I was diagnosed with epilepsy that it started to get out of control.  During the first few months of having epilepsy I would wake in the night, with my heart beating in my head in a real state.  At the time I put it down to the lamotrigine as after a few months these episodes stopped and I didn't really think anymore about it.

In the years since there have been moments where my anxiety has seemed to get worse, during my pregnancy with Benji when I was worrying about labour was one of those times but it was then that I learnt about mindfulness and really used it to take some control back over my thoughts and worries.

When I was planning going back to work I thought it would be ok Benji starting nursery, me starting work, Riley starting school and running my first half marathon all in the same month... but again my anxiety took hold.1

I started to wake in the nights again with these panic episodes and found it hard to control my mood when I was tired. My thoughts start to spiral out of control and could feel myself panic about every tiny thing. I knew it wasn't healthy and definately wasn't helping things. I also knew I was more likely to have a seizure and I really don't want this seizure free streak to come to an end... but at the same time I don't want to add another medication to my list of meds.

So I turned to mindfulness. I find that focusing on the breath when my thoughts get out of control helps centre me. And by doing a meditation before bed such as a body scan my sleep is so much improved. It's time consuming but it helps and I know I need to do more to feel more in control.

I have started trying to fit meditation into every day life more too, just taking more time to concentrate on the tasks we tend to do on autopilot. Like taking time to think about how a meal looks, smells, tastes, feels and sounds as I eat rather than gobbling it down with my mind wondering over other things.

I think mindfulness should be taught to everyone with epilepsy, everyone with a chronic condition in fact. The research behind it is really solid, this paper gives a really good overview of some of the benefits seen in mindfulness. It actually changes the way our minds and bodies work for the better. Yet there is next to no provision for it within our health care and I think that needs to change.

There is a lot of information out there on mindfulness and it has become a bit of a fad but honestly give it a chance, find a book that breaks it all down and find the right form of it for you. It might just changet your life. 

As I sit here early in the morning I can hear the door in the corridor creak, I can feel the cool morning air on my face and rather than letting my worries for the day consume me I feel calm and grounded in the precious present.

NEXT UP: Watch for Jewel's story on the full schedule of bloggers participating in the Epilepsy Blog Relay™ visit

TWITTER CHAT: And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET.

Thursday 1 June 2017

Epilepsy 0 Me 1 ~ finding my confidence again

This post is part of the Epilepsy Blog Relay which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!

6 weeks ago I achieved a lifelong goal I thought I would never be able to achieve due to my epilepsy, I completed the London Marathon.  I haven’t really shared this on my blog so I thought this would be a great opportunity to do just that.

Rewind 12 years…

I was just about to start university and living life to the full, I loved running and my dream was to run the London Marathon one day.  I was walking back from a training run and the next thing I knew I was lying confused and sore in the road… looking back now that was my first seizure.

I went to university and while running with athletics club I collapsed again, this time people saw what happened and a few weeks later a neurologist diagnosed me with epilepsy based on their accounts.  I was in shock and felt like I had lost all confidence in myself along with my independence.

A few weeks later and I had a seizure on a treadmill, that was it, my confidence was completely in tatters and I no longer wanted to do any sport let alone run.

Coming to terms with my diagnosis

There were some dark months when I started medication and came to terms with what living with epilepsy really meant but slowly I started to turn it into a more positive things.  I started to share my story with other through volunteering for Epilepsy Action and the amazing website Youth Health Talk.

Over the years my epilepsy has seemed to settle down only to raise its ugly head again just as my confidence started to improve.  However all the time I have felt that it gave me purpose to help others and that is what kept me going.  I have also met some incredible people on my journey who inspire me every day.

One year seizure free… I want to run a marathon

Finally I was a year seizure free and to celebrate I decided to start training for the London Marathon. Running was pretty scary at first, I was worried about seizures but as I trained I realised that running had a lot of positive effects especially on my mood which my medications tend to impact on.

The more I ran and the further I ran the more confidence I gained in my own body again.  By the time I smashed through the 30km training run mark I felt like I was proving to myself that maybe just maybe my epilepsy might really be controlled, something I have really struggled to believe having lived with seizures for 10 years.

My top tips for running with epilepsy:
  • Always tell someone where you are going for a run and how long you plan to be, having a find your friend app really helps put everyone's mind at ease too.
  • Build up slowly and don't over do it, I started training a year before using the couch to 5k app.
  • Consider a seizure alarm, I have an Embrace epilepsy monitor and it has been great running.
  • Make sure you don't run if you are unwell, haven't eaten or didn't sleep well the night before especially if these are triggers for you.
  • Try mindfulness exercises to help reduce anxiety and help with pre-race nerves.
  • Make sure you are very visible so lots of high-vis clothing and lights for the dark winter nights.
  • Make sure you have water and fuel (gels or sweets) with you specially when running longer distances.
Marathon Day

Training was hard, training was lonely and training really impacted on family time so I was pretty relieved when marathon day arrived as it was the end of a hard six months devoted to slowly building up the miles, trying to avoid triggering a seizure.

But most of all I was so excited, finally I had the opportunity of achieving my life goal.  The atmosphere is amazing and I loved every minute of my marathon run.  The crowds really do carry you most of the way round.  I also dedicated a mile to each of the people I have met on my epilepsy journeys who have inspired me and made me the person I am today.  The final mile I ran for my amazing family, and I was in tears that last mile, tears of joy that I was stronger than epilepsy that I could achieve my goals and that I had made it so far. 

When I crossed that finish line I was in tears, someone asked if I needed a first aider and I said no, these are tears of joy, this just means so much.  Because it really did it marked a huge turning point for me, it helped me to believe my epilepsy was controlled, finally after so many years and I also hope it helps other people with epilepsy aim for their goals whatever they maybe.

Image may contain: 3 people, people smiling, people standing, people sitting and child
So I am sharing this today, hopefully to inspire someone to try something they don’t think they can achieve no matter how big or small that challenge might be because if you succeed suddenly you realise you are stronger than epilepsy and if you don’t quite make it today, tomorrow is a new day and another chance to show epilepsy who is boss.

NEXT UP: Be sure to check out Karen’s post tomorrow at Living Well With Epilepsy for more on epilepsy awareness. For the full schedule of bloggers visit

Don’t miss your chance to connect with bloggers on the #LivingWellChat on
June 30 at 7PM ET.

Sunday 26 March 2017

Happy Purple Day 2017 - Don't fear the purple!

Happy Purple Day to all my fellow wonderful epilepsy warriors. To celebrate purple day and help spread epilepsy awareness around the world a few of us have decided to reflect on our epilepsy journeys searching for the rays of light amongst the clouds of epilepsy.
So if you enjoy this blog search #PurpleTogether for more inspirational stories shining a positive light on epilepsy.
In the beginning…
My epilepsy journey began 13 years ago, I was 18 years old on a gap year, living life to the full.  Having struggled through school where I didn’t feel I fitted in, I was working hard in a job I loved, had found new friends who accepted me for me, I was enjoying life, probably drinking a bit too much and sleeping far too little but so was everyone else.
One day I was out on a training run and the next thing I remember was waking up lying in a country lane having hit my head and bitten my tongue. I was very confused but managed to stumble home. I presumed I had fainted so didn’t really think much more of it but looking back that was my first tonic clonic seizure I just didn’t realise it.

A few weeks later I went off to university, enjoying freshers week and meeting lots of new people my confidence was growing finally after years of bullying. But then on one of my first athletics training sessions I collapsed again, this time people were with me and I was taken to hospital in an ambulance but discharged a few hours later to walk home.

Armed with witness accounts of the last episode I remember within a few minutes of seeing the neurologist he explained that it was a text book tonic clonic seizure and considering the previous unwitnessed collapse it sounded like I had EPILEPSY.

I remember crying my eyes out, I couldn’t drive I was in a new place miles from home and I might have a seizure again at any time, how was I going to manage this? I felt like the independence and confidence which I had built up over the last year had been robbed from me in an instant. It wasn’t fair.
At that time I was in a pretty bad place, dealing with seizures, medication increases and being miles from home. So what turned it all around? Well it was more of a who… the turning point in my epilepsy journey.
Meeting Stuart
My mum took me to an Epilepsy Action information day in Brighton while I was home for the holidays. That was when I met Stuart.  Stuart is an accredited volunteer for Epilepsy Action and he stood up to tell his story and suddenly something switched in my head, Stuart had used his epilepsy to do so much good and make a difference to others, that was how I could get through this.
Stuart will never realise what a difference he made in my life but on Purple Day while reflecting on my journey I would like to thank him for sharing his story that day and for all his amazing support in the years since then you have become a truly special friend.
Over the years my epilepsy has impacted on my life to different degrees, seizures have happened big and small, my confidence in my own body has gone up and down and the challenges epilepsy posed on things like starting a family, work, driving have varied greatly. But the one things which hasn’t changed is my passion to make a difference to others with epilepsy. 
I’d like to share a few of the projects that I have been involved in over the years as a way to show some of the positives and to raise awareness of epilepsy. If you just chose one to look at further it would be an amazing way to spread awareness on Purple Day 2017.
Epilepsy Action
Not long after meeting Stuart I trained to be an accredited volunteer for Epilepsy Action and over the years I have helped at lots of information events, supported other people affected by epilepsy and given epilepsy awareness presentations to care homes, schools, nurseries and businesses across the south east of England to raise awareness and understanding of epilepsy.
Youth Health Talk
While at university I got involved in an amazing project with Oxford University where young people shared their experiences of epilepsy and other health conditions in videos.  I was interviewed for the epilepsy module but was also asked to be on the youth panel which made decisions on the future of the website and it also meant I met lots of other inspirational young people.
HealthE Mums-to-be
After having our first child and feeling unsupported and alone Epilepsy Action asked me to be involved in their HealthE Mums-to-be campaign which was an amazing opportunity to help support other women through the diaries, interviews and workshops. 
It also introduced me to the amazing Kim Morley the only epilepsy midwife in England who helped make our second pregnancy with Benji a far more positive experience and I can’t thank her enough this purple day.
This Blog

My blog which started as just my way of writing down my experience has turned into so much more, it has allowed me to share my story with so many other women and to help others feel less alone and more empowered in the pregnancies.

The seizure and epilepsy support group
Through my blogging I was approached by the lovely Torie to admin this group with a few others.  This group has given me so much support and also feels like a little family (growing fast).  I feel like the other admins have become really good friends although we have never met I know I can turn to them for advice and they will always make me smile.  The group is amazing and I have made friends there who truly understand what it’s like living with epilepsy.
So I guess what I am saying is if epilepsy hadn’t entered my life I would be a very different person.  From a practical perspective I look after myself better now, I don’t drink much, I make sure I get enough sleep, I eat well and exercise.  But my experiences which have really shaped my life are all because of my epilepsy.  I have also been lucky enough to meet so many amazing people on my epilepsy journey who have made me a better person.
Stronger as a family
I also feel blessed because I met my husband at a time when my epilepsy was at its worst and his support and acceptance of epilepsy showed me what an amazing person he is and that together we’d be able to overcome the challenges life will throw at us.
We are now a little family with our two children who are incredible and I feel epilepsy has played a part in shaping that and making us who we are and I wouldn’t change that for the world. I think my children are more accepting of others health challenges because they have grown up around my own.
Epilepsy impacts on the whole family and while I hate that I have been a burden on my mum and dad over the years when I should have been an independent adult. I think it has also brought us closer together.  My Mum has always been amazing picking me up when I am down (literally and metaphorically) and my Dad has a way of supporting me that is much more practical but equally useful.
Not being able to drive has meant I have spent a lot more time being driven around by others, many would see this as a lack of independence and it was frustrating at times but it was also an amazing chance to talk to the people closest to me and I think brought us closer together. My Grandad before he passed away, my Mum and Rich all drove me places and I feel so thankful to them but I enjoyed that time with them just chatting about life.
So yes epilepsy is awful, it steals your independence and self-confidence, friends leave and seizures hurt, but would I change having epilepsy? No I don’t think I would because if I didn’t have epilepsy I wouldn’t be the person I am today.
Show your support this Purple Day
I am now two years seizure free, something I never thought would happen, will it last who knows, but I make the most of the freedom this seizure freedom gives me.  This year I am running the London Marathon for Epilepsy Action which considering how my journey started is a huge achievement in itself. I am going to run a mile for each of the inspirational people I have met on the way.

Stuart, Torie, Leanne, Vince, Faye, Vicky, Gemma, Linda, Amy, Victoria, Louise, Samantha, Byron, Rebecca, Jamie, Seb, Jessica, Brendan, Jade, Daisy, Melissa, Emily, Hayley, Jane, Lydia (and the last mile and a bit, for everyone who has supported me on my epilepsy journey).
So happy Purple Day to you all, I hope this blog shines a positive light on a condition which is so greatly misunderstood.