Five Years Free

I recently realised that I’m now over five years seizure free.

Having controlled epilepsy brings conflicting emotions. The majority of the time it’s great, yet life is never perfect, because life never is. 😄

I used to look at the glistening goal of being seizure free, to me, it was the solution to a my problems but I was wrong.

  • My epilepsy hadn’t magically disappeared. It’s part of me, even if it’s dormant, I’ve accepted that now.
  • People still had problems – friends, colleagues, potential partners etc. Would learn that I had epilepsy and regardless of whether it was controlled or not it was an issue for them. I wasn’t expecting that. Always remember – If anyone has an issue with, walk away they are not worth your time.
  • I felt I had more to lose – I now had a record ‘x’ amount of time seizure free and I would be doubly disappointed when it would come crashing down. I then had a car, what if I lost that? But finally I realised whatever happens will happen, you have to live in the moment and enjoy the good days.

And I believe that’s crucial, appreciating those good days and although hard, worrying and less letting go of the small stresses in life.

I’m so utterly grateful for how my health has been recently. This year has been great, here’s to the next!

Becky 😊

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Funny Friendship

Over a decade later I discovered that my epilespy had effected an important friendship.

Over the weekend I was spending some time with my mum. We were having a nice chat, and I was talking about my blog, and we ended up discussing my epilepsy. I was enjoying our talk in a strange way, as my mum was revealing information and feelings about how my epilepsy had affected the whole family, and this is information that I don’t usually get from my mum.

As the conversation between us continued, we were discussing different situations where people in my life couldn’t adjust to the knowledge that I had epilepsy (Sadly this is common).

Then my mum dropped this bombshell…

This following conversation between my mum and I is about a childhood friend of mine (Sarah) and to briefly fill you in. She was my best friend. We went everywhere together, lived a few doors away from each other. The moment school was over we’d be at each other’s houses. All my family knew her as she was always around. When I was in my mid-teens she disappeared (as in stopped bothering with me) I was a little upset but at that age people did drift apart – that’s what I thought *naive*

This is how our conversation went:

Me: It’s disappointing when people can’t accept epilepsy. It’s happened so many times to me, I would like to do as much as I can to educate others so it doesn’t happen to other people.

Mum: Yeah, it was sad when I noticed that Sarah stopped bothering with you not long after you were diagnosed.

Me: …what?

Mum: You didn’t notice?

Me: I noticed that she didn’t want to come over as much, but I thought it was due to us just drifting apart…naturally?

Mum: I saw that she became more and more distant after you were diagnosed with epilepsy, because you two were always so close. After that, it was never the same. I don’t know whether it was her or whether her parents suggested she kept her distance. But she just stopped being around you. I can only think she was scared if something happened.

I was quiet for quite a while and my mum finally broke the silence apologising and asking if she’d made me sad. To which I said no, but I guess I was. I asked my mum how did she’d noticed this and I didn’t. her reply, ‘ A Mum notices these things.’

 

It suddenly hit me, the thought that one of my closest friends could no longer want to see me because of the fact that I had epilepsy. I know my mum was only working on an assumption, but it did seem to add up, and it made me feel a little depressed. Even though we were only young teenagers at the time I thought I knew my best friend well enough to not only notice what my mum had, but I also thought she would be able to talk to me about anything.

When I thought back, she never asked me any questions so I never spoke to her about my epilepsy, I just assumed she’d accepted it.

Over the weekend I had some time to think about it, I thought that it was better that my mum highlighted this to me now rather than years ago. I think a few years back I may have been a lot more upset about hearing how Sarah didn’t want to be my friend anymore because I had epilepsy.

Unfortunately I have a feeling that this happens more commonly to people than I realise. From my first blog you’ll know that I want fewer people with epilepsy to feel judged and  it seems as if it was happening to me even without me recognising it.

If you are reading this and you’ve been in a similar situation to me, where you had a close friend and they suddenly disappeared and you discover it was due to something you had no control over. Forget it. They are clearly not good friends for you, and not worth your time. If they were true friends they’d stick by you no matter what and support you, because that’s what friends do. We all know the words from the theme tune from Friends: ‘I’ll be there for you. Cause you’re there for me to!’  For me, at that time I had other friends who I found to be true friends and they’re still a part of my life today.  The one friend was always happy for me to talk to her about anything that was on my mind and even offered to go to hospital appointments with me.

If you are reading this and you are in the situation my friend was. Perhaps you know someone with epilepsy or another type of condition or illness? The most important thing you can do is support them and be there for them. If you have questions, ask them. Most people who have conditions like epilepsy or diabetes will manage their health themselves, If they needed any help, they’ll ask, and if they need you to know anything just in case something happens, they’d tell you. But it’s guaranteed that if you just spend time with your friend it will make them feel better, and that’s the same for everyone.

Thanks for reading!

Becky 🙂

 

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Keeping Relaxed

Many people who have epilepsy find that the stresses of day-to-day life can aggravate their condition.

During one of my most stressful times – university where I was also battling a crazy family life, people were suggesting for me to take up yoga, but I couldn’t find the time, spare money or a lift to the classes.

Naturally, I find doing the things that make you happy to be an excellent way of reducing stress.

But even then, I have had trouble sleeping.

One effective way of relaxing I find is through meditation, I listen to recordings on YouTube before I go to sleep, as this is the time my mind is really overactive.  I find these recordings to be incredibly effective at removing that constant chatter, helping me sleep.

I know that not many people have tried meditation at they think it’s a bit ‘out there’, but it really does relax you and clear your mind, I would recommend it to anybody.

For example, I was listening to one the other night and woke up about 4am wondering why I was uncomfortable – I had fallen asleep during the recording and still had my giant headphones on!

I’ve also listened to meditations the night before tests as they help promote positivity and self believe, which is perfect for me, and you do wake up with a much more confident attitude.

Here is a sample video from Youtube 

Tips:

  • The majority of relaxing music is just that, with ocean waves and gentle music. It will just remove the over thinking in your mind and allow you to relax.
  • There are some videos which use things such as white noise and… alpha waves? Some descriptions have an epilepsy warning in them so I would steer clear of them. You can always consult a healthcare professional you want to listen to them.
  • Some tracks are really relaxing others are annoying, and a little cheesy, but it’s about finding something you like. I have had similar results with classical music but I do find that sometimes I end up listening to the music!
  • Last tip, if you have an iPhone and you want to save your battery, once the video starts playing, press the off button on your phone once so the screen goes black. The video will stop playing, but when you press the home key, on the screen you will notice you can press play without seeing the video, just tap the phone screen off again and it will continue playing for you!

I hope you’ll give it a try to see it helps you stay relaxed.

Becky 🙂

 

Why am I here?

No, don’t worry I’m not getting that deep. I just feel that I should explain exactly what drove me to start a blog on epilepsy.

I have lived with epilepsy for over 10 years and I am utterly grateful to say that for the past few years it has now become controlled.

You now might be wondering, so why are you are you now writing a blog? But after I had controlled epilepsy I honestly thought that the struggles with telling people about it would be over, but they’re not. Only a few months ago, I left a job due to the fact that I knew my colleagues were unable to accept it professionally even though I insisted there was nothing to worry about. Many of my friends and family thought I was insane for leaving, but I feel that life is too short to be in a job you’re not happy with.

Naturally everyone’s experiences with having to explain their epilepsy to other people will be different. Personally, I have found that about 90% of the time I have received responses that I would have rather not had. For a long time I tried not to dwell on it thinking that there wasn’t anything that I could do to change people’s attitudes or feelings. But then I realised that other people’s reactions would change if they were simply more education about epilepsy.

Also, for a huge amount of time, I never knew anyone with epilepsy. I never had anyone to talk to about it, to share my experiences, my fears or my thoughts. For many years I only knew of ‘a guy who knows a guy’ with it and the odd person who had one seizure, which wasn’t exactly helpful. A few years back I was working with a girl who had epilepsy, I approached her one day and I brought up the topic about myself having epilepsy, she looked so relieved to perhaps not be alone, and we spoke for ages on the subject. I then realised that although I might have controlled epilepsy I am still helpful, and I would like to help anyone who needs it.

Welcome to Ardent Journeys

I decided to name my blog Ardent 0b458d6722087dab698677362d850f0aJourneys because I feel that life with epilepsy is a life full of journeys. Having epilepsy myself, I have discovered it has had a huge impact in making me the person I am today. I look after my health, have empathy for other people’s health and wellbeing, and appreciate all the support that I have ever received.

However, don’t want to have epilepsy viewed as a negative aspect of life that holds people back, stops them from achieving their dreams, and I don’t want people to be afraid to have to tell anyone that they have epilepsy for fear of that person’s judgement or reaction.

I hope that not only will I be able to post positive stories about my journey through epilepsy, but I also want to raise awareness and educate other people about epilepsy.