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.
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