It’s 1:35 AM. I’m knackered, have had a busy day and need to go to sleep. But instead, I’m sat here crying. Crying in pain and upset. Right now I hate myself. And I guess the best way to process those sorts of feelings is by writing them out.
I know I have a strong pain threshold. It’s why I always won when my sister and I fought as kids. She was stronger but would crack quicker. I can take kicks, punches and hair-pulls but I can’t deal with a ripped up mouth. Six days on from a cluster of as many seizures, my own saliva feels like bleach against the inside of my lip. And I know it hurts even more because I did it to myself. I’m mad at myself for having seizures. Angry that they never go away and never will. And for some reason, I’m blaming myself. I mean, I should’ve grown out of it or found meds that worked. It just isn’t fair.
Things are good right now. I should be moving forward with my life. Not having to cancel big opportunities because I can barely talk. Or spending two days straight in bed because my entire body has worn itself out. And every time I bite it’s even worse. It just sucks. Because I know that no matter how well I do. How far I go. I’ll always have one extra hurdle to climb over. One extra obstacle to avoid. And I can’t. It’s part of me and I can’t change that. I can’t fix it. I never can. And no matter how much I learn to love myself, I feel as though that’s something I’ll never be able to accept.
I’ve lived with this diagnosis for 22 years. That’s 85% of my life. And it’s still not ok. It never will be. I’ll never be normal and I’ll never know what it’s like to be. And even though I know that lack of normality is what’s created the best parts of me, it’s also made the worst. It’s made me jealous, unreliable, fragile and just wrong. Maybe the salt from the tears currently dripping into my mouth will somehow soothe it. But they won’t fix it.
I know that everything I’m feeling is wrong. It isn’t my fault. But it feels that way. And when I see what this does to those I love it makes it even worse. I’ll forever be reliant on them. Always be a cause for concern. No matter what. I’ll never be independent. Or live my own life. Because I’ll always have epilepsy. And I just can’t envision a version of myself that’s fully ok with that. There’s just so much I’ll never do. Like have a ‘proper’ uni experience or be able to move abroad. I’ll never live alone. Never learn to drive. My entire life I will rely on others.
I just wish this would go away. Not necessarily the epilepsy. But the damage it does. I just wish I could be normal. Or at least go to bed without having to give myself a pep talk every night. Without fear of what might happen. Without the knowledge today may have been my last. I know I’m so lucky that it wasn’t (I assume). I know so many people who aren’t here anymore. Life is something I should be grateful for. But every day it just gets scarier and scarier. The further I go, the farther I have to fall.
Sometimes distraction keeps me stable. At other times it just gets too much. Right now that’s what I have to do. And eventually, I’ll go to sleep. If you’ve read this whole ramble, thank you. And if you want to support me, or just keep up to date, subscribe. All you need to do is fill out the form at the bottom of the page (on mobile the form is off-screen to the side, something I plan on fixing soon). It merely means an automated email each time I upload a new post, nothing else. And if you want to respond, do so on the actual post (comments are also at the bottom of the page) rather than where you see it shared. It builds traffic etc. and helps me out.