#letterstomyepilepsy

[numbepilepticlife]

Dear Epilepsy,

I’ve recently gotten good seizure control. I’m very happy with my progress, I can go out and enjoy myself. I’m getting better slowly, at least with my Epilepsy.

This is progress, good progress.

Sincerely, an okay girl

[numbepilepticlife]

Briviact is a fucking trip.

Seriously it’s a new anticonvulsant that just started in Australia, which I’ve been told is a new medication similar to Keppra, but less side effects. Iits been in Europe a few years with good results, so it’s spreading I guess. Its apparently known for less mood swings? Either way I’m slowly being switched to it.

@fuckepilepsy @dont-look-at-the-lights @the-twitchy-life @the-seizure-blog you guys might have some followers taking it or being recommended it. It’s personally got a much better reaction from me than Keppra.

I do however feel like I’m on a 360* ship, but again it seems much better than Keppra side effect wise.

[numbepilepticlife]

I need an adult

Ok so this isn’t a letter, but I need advice from anyone who will listen.

My doctor wants to take me off my anti-epileptic medication, and I’m very against this. Now getting it in the first place was horrid, it took months for doctors to listen to me, and actually put me on it. He wants me off it and another EEG, and I feel like I’m being threatened with my medication, because he is reluctant to put me back onto it afterwards.

It’s the only thing that has lowered my seizures to a manageable level, and I don’t want to go back into the hole I was in....

I need an adult....

[numbepilepticlife]

Dear Epilepsy,

I don’t get it. Why do people stare at me now? I know I look weird when I get muscle spasms but I can’t change that. Why do people stare at me like I’m some zoo exhibit? I hate it and I hate you!

I’m bitter today; I don’t know why and I don’t really care. It seems like everything bad comes my way, even though I know that isn’t true.

My mum tells me to look at the good things and not the negative, but everytime I find a good thing you take it away. I did figure skating, it was the only sport I enjoyed and now I can’t. I did drawing and now my hand jerks too much to do it. I used to write, now I forget my ideas.

I’m having a bad day today. I really hate you right now.

Sincerely,

A lost girl.

[numbepilepticlife]

Dear Epilepsy,

I’m feeling better now. I realise I don’t have to hate you constantly but I don’t have to love you either. You took a lot from me, but I can rebuild myself, humans are good like that.

In the meantime I should get to know you, apart from that you don’t like lights or being tired, something that I can agree with.

And at least you hate sport too, that’s definitely a positive. Nobody likes running anyway.

Sincerely,

A girl who really, really, really hates sport.

[numbepilepticlife]

Dear Epilepsy,

We really need to reach an agreement on this head banging. Just because you think it’s funny doesn’t mean that I do.

Also my family are getting to know you better, but it seems like everytime they nearly understand everything, some new thing comes along. I know it must be hard for them, so I’m going to have to ask you to stop. Like now.

My friend has learnt you too, and he’s pretty relaxed about it which it good, but I’m nervous about everyone else. I’m going to a party this weekend, and I know that I’ll get somestares, but it’s for a friend, right?

Well if they don’t like me now that I’ve got you, i guess they weren’t really friends in the first place.

Sincerely,

A kind of nervous girl.

[numbepilepticlife]

Dear Epilepsy,

On a positive note, I didn’t have any large seizures today. I feel like I’m starting to make some progress!

I get to get a medical ID because of you, though I don’t particularly want one. Some part of me feels like I’m labeling myself, and that I’ll finally have to recognise you once I get it.

It’s like I have to let this big, ghoulish monster into my house, which doesn’t sound good, but you aren’t that bad....

For now anyway.

Sincerely, me.

[numbepilepticlife]

Dear Epilepsy,

No figure skating for me tomorrow, I hit my head pretty hard yesterday. I’m sensing a reoccurring theme here...

The pain killers aren’t working anymore, and I don’t know what you did but I don’t like it. My head keeps pounding and my joints ache, is it you or the medication? It makes it really hard to focus; I can’t read a textbook like this.

I also have to get rid of my bed now, and I hate adulting. I love my loft bed but you make it too dangerous- something you’ve already proven and I’m not asking for more proof.

Going through the shelves is a pain, especially when I’m in pain. We really have to come to some sort of agreement around this....

Sincerely,

A tired and bitchy epileptic.

[numbepilepticlife]

Dear Epilepsy,

You really are a pain, you know that? And the head banging has to stop; I’m not in a band.

I woke up with a really bad headache, but I can’t tell if it’s from you or the tegretol. All the symptoms merge together now, and it hasn’t even been that long either. What a pain.

What I really want to know is why I can’t go in the sun or eat grapefruit. Seriously grapefruit is a no go but lemons are fine? And I live in Australia, how do you expect me to avoid the SUN. It’s winter and you can get sunburnt at midday, like, what do you expect me to do.

I know I was a hermit before, but it’s still not fair.

I didn’t realise how many things I used to enjoy until you took them away.

Sincerely,

A kinda sad teenager.

[numbepilepticlife]

Dear Epilepsy,

I only just met you, and you’ve already become real annoying as of late. You give me constant pain, and make me miss my classes. To be frank you’re a pain in the back.

Apparently I’ve had you for a while, just none of my doctors cared to look at you. Too much work I guess. You’ve got me on meds now and it’s annoying, I can’t do anything anymore. That’s fine for you but what about me, I don’t remember agreeing to this arrangement.

I know I only formally met you recently and all, but this is driving me crazy, delete my number, don’t call me anymore.

Sincerely,

A tired and in pain girl.