Epilepsy Awareness - My Story

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Epilepsy.

If you don't know someone who has epilepsy, then the chances are, you don't know a huge amount about it. That's OK. There are many conditions out there that I know absolutely nothing about. No one expects you to know every detail of every medical condition in the world!

I have epilepsy. I am very lucky in that it is completely controlled by medication. I haven't had a seizure for a very long time. I would like to raise awareness of epilepsy, and so would like to start by telling you my epilepsy story...

Up until 3 years ago, I didn't know much about epilepsy. The only time I had ever encountered anything to do with epilepsy was back in Primary school, where I had a friend whose Dad had epilepsy. He had a seizure one day when my friend was over at my house to play. Her Mum came to pick her up because she was very upset and I remember feeling annoyed that she went home! I know! I can feel my face flaming with embarrassment right now just thinking about how insensitive that was. Then again, I was 8 years old and had no idea what a seizure was.

It turns out that my first brush with epilepsy was actually way before that embarrassing moment
in Primary school. The day I was born I had several seizures. I was born with the aid of ventouse delivery and it caused a burst blood vessel in my head. This led to several episodes where I was 'shivering'. I knew all of this, but had never realised that the 'shivering' was actually me having several seizures.

Now cut forwards nearly 30 years. It was a Saturday morning and my husband Matt and I were getting ready to go to Disneyland for the day - we were living in Shanghai at the time, which has an awesome Disneyland. I had just got out of the shower and a peculiar feeling came over me. I remember looking in the mirror and seeing blood starting to drip out of my nose. I had never had a nose bleed before in my life. My own blood completely freaks me out, but I felt very calm.

I woke up as I was being lifted onto a stretcher in my apartment, completely naked, covered only in a towel and my own blood. I couldn't speak properly and I didn't seem to have any control over my arms and legs. I was very confused.

Luckily, I had very good health insurance while living in China and I was taken to a great hospital
where the doctors and nurses spoke very good English.

Later that day, Matt told me what had happened. I had fallen flat on my face, after not being able to respond to Matt asking me if I was OK. I landed on my face and broke my nose, deviating my septum, which required surgery a few days later. I had hit my front teeth on the wall on my way down, and to this day there are still gouge marks in the wall from where I fell. My front tooth has never been quite the same since. I had proceeded to have a full grand mal seizure - those are the big ones with twitching limbs. Matt had called an ambulance and our neighbours, who also worked with us had come to help. They were the ones who covered me in a towel. It took me a long time to get over the fact that my colleagues had seen me naked and covered in blood. We do laugh about it now!

I was in hospital for several weeks, having every test and scan you could possibly imagine. I feel
like i spent more time in an MRI machine than I did in my hospital room. I was very tired and a bit 'out of it' when my friends came to visit. I wasn't put on any medication, and was sent home to carry on my life as normal. The doctors didn't know what had caused the seizure or whether it had simply been a one-off.

Two weeks later I was back in hospital again, although thankfully I have never since hurt myself as badly as that first time. I was put on steroids, which made me fat and miserable. I was misdiagnosed with MS. I remember lying in my hospital bed while the doctors discussed whether or not they thought I had cancer. I was put on the anti-seizure medication Levetiracetum. I saw several different doctors in China, but none of them could come up with any answers for me as to why this had happened.

I learnt that a feeling of 'deja vu' is a type of seizure. I have had this feeling every now again for at least the last 20 years. I had no idea what it was, so told no one. It is like a physical reaction to deja vu. My whole body feels like it is aware of every noise and movement around me and I feel like I know what someone is going to say before they say it. When I was at school and even at University I used to think that I had a superpower. I would be watching Stargate (yes, I love that TV series) at University on my laptop and suddenly I would know the next 30 seconds of dialogue, even though I had never seen that episode before. I even used to welcome this feeling, because it made me feel powerful. It was only so many years later that I learnt that this is a common type of focal seizure. I had no way to describe it and so I had never looked it up online. I thought that I was the only person in the world who felt this. This is actually a focal aware seizure. It last about 30 seconds and I could have one while maintaining a conversation and the person I was speaking to wouldn't even notice. Only people who know me very well, know when this happens.

There are other types of seizures out there, but the grand mal and the focal aware seizures are the
two that I suffered from. I had been on the Levetiracetum medication for a year when I decided to seek a private specialist in the UK to see if they could work out what was going on. I found an epilepsy specialist in London that I visited once when I was home from China for the Christmas holidays. He told me to stop taking my medication immediately and to 'see what happened'. I had a big seizure. This was very bad advice. No one should EVER immediately stop taking any form of medication. You need to come off it very very slowly.

I looked again for a UK based specialist and came across Professor Chataway. He is an MS specialist, and that was still what the Chinese doctors thought I had, so I went to see him. He diagnosed me pretty quickly with epilepsy, told me, to my great relief that I didn't have MS, and after studying my MRI scans and test results from China, concluded that the seizures were due to my birth trauma. No doctor I have ever seen has been able to tell me why the seizures started 30 years later and that is just something I have learnt to accept.

Professor Chataway was wonderful. I can't even describe how incredible it was to talk to a doctor who spoke English as their first language and who had a complete understanding of my medical needs. I cried after seeing him for the first time, because it was such a relief to finally have someone who understood. He ended up transferring me to the Neurology department at Southampton hospital, because it is much closer to where I live. They have an amazing department of doctors and nurses, who understand everything I'm saying and who are able to answer my questions and guide me through how to learn to live with epilepsy. There were several reasons why Matt and I moved back to the UK from China, but the NHS was a big one. You don't realise how important it is to be able to communicate in the same language until you find yourself in hospital in a foreign country. It just piles stress on top of stress.

The Levetiracetum never completely stopped my focal seizures, and the grand mal seizures started to break through early on in my pregnancy with Amber. She was draining the medication out of me too quickly. In July 2020 I was put onto a second anti-seizure medication, Clobazam and I now take that alongside Levetiracetum. I have not had any epileptic activity - none whatsoever - since then!

I had started my photography business before epilepsy came into my life, but that was all put on hold when I didn't know what was going on with my health. In 2020 I used the national lockdown to work on my business model and build up my website and cultivate my social media following. I had already come to terms with living with epilepsy. I know that I am likely to be on medication for the rest of my life. That's fine with me. Taking a few pills every day is no problem at all if it means that I don't have seizures!

3 years ago, I never would have imagined that I could have built my own business and made it successful. I couldn't even see past the end of the week, not knowing if I would end up in hospital from one day to the next. I am a very lucky person that I have a wonderful, supportive, calm in a crisis (sometimes!) husband. I couldn't have got to where I am today without him. I often think that epilepsy is harder on those we love than on ourselves. Sure, I'm the one that has the actual seizure, but I black out and don't remember anything of it afterwards. The people close to us are the ones who have to deal with the seizure, maybe phoning an ambulance, timing seizures, taking note of anything that happens, and constantly worrying if we don't text back immediately, or if there is a noise from another room and we don't immediately confirm that it was a cat jumping off something rather than us falling on the floor. I think for those that love us the most it can almost be PTSD like.

So, I am sure you are wondering why I have decided to share my epilepsy story on my blog. There are several reasons. The first is that I want to show that even if you have a medical condition, or an invisible disability such as epilepsy, nothing can hold you back from pursuing and being successful in fulfilling your dreams. I didn't imagine that I would ever be running my own business and now here I am. I have everything I could ever want - a job that I love, a wonderful, supportive husband and a beautiful baby girl. You might be right at the start of your epilepsy journey, you might have had epilepsy for a long time, or you might not yet have found a way to prevent your seizures, but there is always light at the end of the tunnel. You can achieve your dreams if you work hard and believe in yourself.

The second reason that I decided to share my story is because I want to help raise awareness of epilepsy. I want to shed some light on what it is like living with epilepsy, and how many different people can be affected by epilepsy in many different ways. I have teamed up with the wonderful Epilepsy Action, a charity that provides support and advice for anyone affected by epilepsy. They raise money to fund research into epilepsy, which in turn helps to improve the lives of those living with epilepsy.

In an effort to help raise awareness of epilepsy and to raise money for this excellent charity, I am offering 12 family photoshoots to families who are affected by epilepsy in some way. Maybe a member of the family has epilepsy, or maybe they work with those with epilepsy. I want to tell the stories of those connected with epilepsy in some way. One family will be featured on my blog each month and they will tell their epilepsy story. My hope is that this will help highlight just how diverse epilepsy can be, as well as showing just how important it is to have photos with your loved ones.

Are you interested?
Here's a bit more info about how these sessions will work:

- There will be three scheduled mini-photo sessions on specific days in the coming months.
- You can choose which date and location works best for your family.
- Once you have chosen the date, you will be asked to make your donation to Epilepsy Action.  100% of the money donated will go to Epilepsy Action.
- You choose your favourite 10 images to download, watermark free, to do whatever you like with - print copies to frame, send them to Grandma, post on social media, whatever you like, the photos are yours!
- Once a month one of the families and their epilepsy story is featured right here on my blog.

If you have epilepsy or you work or volunteer in the field of epilepsy and would like to be featured on my blog, please get in touch via the Contact page on my website. If you would like to know more about Epilepsy Action, you can visit their website at www.epilepsy.org.uk

I can't wait to get started. Let's raise some money and help make lives better for those living with epilepsy!


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