Hello everybody, hope you’re all doing well.
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.
- Diarrhoea – sorry to be gross, but yeah.
- 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 🙂