epilepsy – Love, Georgie

Hello everybody!

So, I wasn’t originally planning to make this a blog post, but there is something I’ve been thinking about lately: how my old life compares to my new life (though it’s not all that new anymore – nearly 8 years!) Old me compared to who I am now. It’s not necessarily bad – certainly not all of the time – but I think about it a lot.

My ‘before’ life just doesn’t fit me anymore.

When I was diagnosed, I believed I was trapped. Which I am, to an extent. I started to idolise my old life because I thought I was free then. I thought I could do anything, and I took it for granted. Which, again, to a certain extent, is true.

My 17-year-old life is not, even the slightest bit, similar to my 25-year-old life. I know, so many people – ill or not – could say the same thing. The world has changed them. Life has changed them. Work has changed them. Love has changed them. A movie has changed them. I don’t know. But, I do know something for certain: I am not who I used to be. I’m not the same, and that life doesn’t fit.

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You know when you just don’t feel like doing something? No proper reason, you just can’t be bothered? Well, I hardly ever have that feeling anymore. I want to do it all, probably because I know I can’t. It’s a true phrase: ‘we always want what we can’t have.’

Sometimes, it can be hard to get through to people, even the most understanding souls, that I can’t do it all. Because I take tablets – multiple medications – that make me more tired than tired should be. Because I have seizures all of the time, and even if I’m not unconscious and convulsing on the floor, I could still be having them. Absent seizures. My brain is still playing up for the majority of my time. And sometimes, I’m probably not telling you (unless you’re my mum!) that I’m feeling ‘off.’ Because we’re having a nice time, and I don’t want to mess it up. I don’t want you to take me home, or feel like you should go home. So, I try my best to remember what you/we were saying or doing. I try to remember everything. Even if I forget it later – which happens a lot – at least I’ll know for now.

These are just examples, but I used to walk a lot. Alone. It wasn’t, like, a weird thing. I’m just often surrounded by people, which I enjoy and am so grateful for, but sometimes, I need a break. Pre-diagnosis, I could take that break. Now, I can’t.

Things need to be planned. It all takes thought and preparation. I need someone to be with me. I need them to have their phone, with enough battery to call 999, a rescue medication, water. I also need my inhaler. I can’t really go if it’s ridiculously hot outside. I can’t go if its rainy, stormy weather. Sometimes, getting sick can’t be helped. But, I won’t do anything that has a high chance of making me sick. Because then, I’ll have more seizures. I don’t like walking on main roads because if I have a seizure, everyone will see the commotion.

That’s what my life feels like sometimes. Those five words. “If I have a seizure…”

I used to go on public transport. I mean, I was never its biggest fan. I’ve always preferred the car, but I could jump on a train. Easy. Buses were harder because I just feel anxious on them. That’s without a brain disorder or mental health issues. But still, I could do them if I had to. Now, I can’t.

I can’t be guaranteed a seat, and I need one – if I’m going to fall, it’s going to be easier from a seated position. Again, I need someone with me the whole time, and again, they need a charged phone and a rescue med, and the confidence to administer it. They also need the ability to calm me down, because if a train is crowded (or even if it’s not), the mixture of fear, stress, that feeling of the walls caving in, the worry about if I have a seizure, how everyone will react if I do… that’s going to bring on a panic attack. Probably major. I’d be surprised if it didn’t. The motion on a normal train also makes me feel sick. Which makes me scared that I’m going to puke. Which also makes me panic.

I can’t just go out to eat, to the beach, to see a movie… I can’t just go to the gym. (If you follow my Instagram, you’ll know that I recently had a seizure on a treadmill. Scary!) I mean, I can’t even use the knife to chop up salad for our dinner tonight. But, I guess that’s a good excuse for never having to contribute to making dinner.

I know your (meaning whoever is reading this) life isn’t easy either. I know you might think I’m complaining too much. I’d say I’m not, but that would be wrong of me. I am complaining. Because it’s hard. It’s much, much harder than my 17-year-old self could ever have imagined.

…

I was writing this yesterday, late afternoon. Just to feel better in myself, because writing it down tends to help me. But, I got up to use the bathroom, and had 3 tonic-clonic seizures back-to-back, then 2 absent seizures when I finally came around.

The paramedics rushed me to hospital and were worried about the chest pain I was having. Turns out I’d hit that area during the fall. My neck and back twisted during the convulsing, and I have muscular damage to the left side of my neck, which means I can only move it so far before the pain stops me. I still have this kind of ‘numb’ feeling in a few of my fingers. I also have ligament damage to my right wrist.

Last night, I missed out on a family wedding party. Now, honestly, I wasn’t actually planning to go. My medication is changing, and I’m adjusting – mind and body – and I’m feeling ‘strange’ most of the time. So, as much as I’d have liked to go, it wasn’t the best choice. Still, I had a choice. But then, in the blink of an eye, I didn’t. And neither did my mum.

As down-hearted as this may feel, it’s not like that. I feel very very lucky. I feel like I must have some kind of guardian angel. Nothing can stop the seizures – not presently anyway (there is always hope!) – but something has stopped me from dying. I’m really sorry if that sounds blunt or horrible, but that’s the truth. That’s the worst-case scenario.

Today, I’m not feeling my best. Understandably. I’m tired. I’m in pain. I’m snappy, because of those things. I’m on egg shells. Like it’s going to happen again today. Later. In ten minutes. Right now…

Okay, well it didn’t happen right then, so that’s good!

I hope that if I really do have some kind of guardian angel, they can please let me have at least this one day, to rest. Most importantly, for my family to breathe. It’s not just me who goes through this. My closest people go through it for me too. I should probably remember that when I’m snapping at them…

Hope everyone is having a great weekend, and my next post will be super exciting! I have it all planned out, but I can’t post it just yet.

Love, Georgie xox

PS. My sisters brought me a goody-bag home from the wedding! Yay! They are #SisterGoals

Hello everybody, hope you’re all doing well.

PrettyBeach

First of all, I know I haven’t written a blog post in A G E S. Hope you like my websites new beach hut theme! #SummerVibes

I have loads of ideas for future posts and projects, but lately, I’ve been super busy with things concerning my book, but also, I’ve been suffering quite a bit. That’s what this post is going to be about. So, here goes.

If you know me personally, you’ll probably know that I take multiple tablets every single day and every single night. For epilepsy. For depression. For anxiety. Then, there’s pain medication. Rescue medication. Preventer and reliever inhalers. Multi-vitamins.

It’s a lot. But, it’s a lot more than just taking tablets.

For the last few weeks, one of my medications has been in the process of changing. I very quickly started feeling like I was having electric shocks in my brain. There were gone almost as quickly as they came, but then they were back. Repetitive. I didn’t really think about it being a side effect, until the feeling became unbearable, and started affecting my arms and hands too.

I know doctors usually advise against googling your symptoms, but I’m glad I did, because I found out that the electric shock feeling was normal for my specific medicine, while it was changing. They call them “brain zaps”, which is a completely accurate description.

They weren’t exactly painful, but very alarming and almost constant, so it affected my everyday life. It stopped me in my tracks multiple times, and at night-time, they felt even more overwhelming, to the point where I couldn’t cope staying in the room on my own.

I mean, going to sleep is like the only time I’m completely alone. It doesn’t sound like a big deal, especially because I understand why it’s not safe for me to be on my own. But, these days, I actually like going to bed, because it’s often when I sort through my personal thoughts. I know that sounds kind of weird, but I just mean thoughts that aren’t about writing books and blog posts, and it is a time when I try not to think about my seizures.

So, that’s brings me onto seizures. My disorder is not under control, despite the religious taking of these medications, and it’s scary. The people around me always commend my strength and bravery, but sometimes, I don’t feel brave at all. I deal with it, because I have to, but dealing with it has never once been an easy task. My seizures feel relentless.

There are triggers I can avoid – alcohol, for example – but there are also triggers I can’t avoid (or, at least, I can’t always avoid), like my stress levels. The thing is, with my disorder being so rare, I’d still have seizures, even if I could stay away from any potential trigger. That’s a fact, not just a thought.

So, on top of these brain zaps, I’ve also kept on having seizures, and dealing with the aftermath.

I’ve been suffering other side effects too, but the more “expected” ones, I guess:

Headaches. Really really bad ones.
Exhaustion.
Shaking
Light-headedness.
Diarrhoea – sorry to be gross, but yeah.
Nausea.
Irritability and changes in mood (I literally snapped at everyone, and I promise I’m not usually that kind of person!)

Together with seizures, this has stopped me from doing certain things lately. It has meant that I’ve let people down, which is a feeling I hate, but have to experience quite often. It has caused sleep disturbances, which is another thing my epilepsy doesn’t like. It has put extra pressure on my family, because I kept getting so frustrated at everything. It has stopped me from completing tasks and staying focused and having some semblance of a routine. My additional symptoms have had an effect on my mental health too, and that’s a part of me that is already fractured…

Okay, I’m going to stop now. I do realise this post has become a bit of a rant, and I’m sorry about that. But, it can be so hard sometimes. Overwhelmingly hard. At times, I find that people still think it’s just the seizures. But, it’s not.

I tend not to complain, and I always try to laugh about things, because the other option is crying my time away. No thanks. So, this is just an insight; a small part of all the things people don’t see.

As people, we are all so complex, and our problems are more intense than we probably allow other people to see. With that being said, my message is: if you want to let it out, just let it out!

It’s okay to complain sometimes. It’s okay to acknowledge that life is tough, that school/work is boring you senseless, that your child’s tantrums are driving you crazy, or maybe you’re a teenager, a bit mixed-up in the modern world, feeling like your parents just do not understand a n y t h i n g. (We’ve all been there!)

Go to someone you trust. Someone who lets you shout and scream, if that’s what you need.

If not, you can always contact me about it, by clicking here. I’ll be there for you!

(Who started singing the Friends theme tune then?!)

Love, Georgie xox

PS. You should also check out my gallery page, to see what I did to cheer myself up 🙂

Love, Georgie

Tag: epilepsy

Then & Now

“I Have Brain Zaps!”