Emi and Epilepsy

Just a kid with epilepsy trying to make a difference

[zebulontheplanet]

You’re still chronically ill if you have a good day. You’re still valid. Your chronic illness is still valid if you have one good day out of a hundred bad days.

[free-my-mindd]

Reminder to take care of your heart today.

[ember-rose]

New Year, New Me

Hey y'all, I noticed it's been a bit since I posted on here.

I guess there isn't *much* to update you on? Other than the fact my medication was adjusted and an additional one was added on.

My biggest focus right now has been my left leg, since I've been in a lot of pain. At first, the doctor thought it was nerve-related, but then thought it was physio... and now I'm gonna be getting scans done of my leg soon.

But, let's not talk about health.

It's a new year, and although each year has its ups and its downs - I have a good feeling about this year. I mean, I already went into this year re-evaluating my friendships and who I want to be around.

Also for all the goals I've set this year - like my VNS, finding something so I don't have to get my heart surgery... and healing my leg. Plus, this year I want to put a lot of focus into volunteering and family.

What are you most excited about for the new year?

~ Ember Rose

[ember-rose]

Impromptu Post:

The biggest scam in my life is loyalty.

Everyone says they have it - well, they don’t.

The other one is the fact my family says they’re r loyal - they aren’t.

I think I’ll just stop talking to people😔💔

[ember-rose]

November 20th, 2023

Today was. a day.

It started off really well - I did some goal setting.

CFS is holding a family Holiday dinner for all the kids in care; and my social worker wants my dad and I to participate.

I wonder if part of her wanting to do this is because she knows we don't really 'do' holidays... because there is no use in really having a traditional Holiday dinner for two people.

The other knows it's for the purpose that it looks good to CFS, and that's just kind of how they do holidays with kids in care and their families.

Touching back on the Holidays - I think it's way too early to break this stuff out. I mean, I used to really like the Holidays - but now? they're really not important to me unless it involves giving back to other people.

And people is where my day took a whole new twist.

I vented yesterday about people. About lying and loss.

Me, I was forced to socialize with other kids my age... because I never was properly socialized. Little me was around a bunch of teenagers, until those teenagers turned into adults, and then I was just the kid in the room of adults... which, truthfully, I didn't mind. I enjoyed that.

I've learned that kids my age are vicious, vile, dramatic, and extremely cliquey. Jealousy and comparison still exist on an exsistential level... and I want NO part in that.

Plus... I've lost just about every friend I've become close with so... now they're just. friends. and if they want to be my friends, great. If not, I guess I just don't care.

Besides, what's all this BS about trying to CHANGE your friends?!

I'm me, I'm gonna be who I want, I'm not hurting anyone, and I refuse to change in order to fit into someone's 'ideal' friend.

Alright, I think that's enough for one night.

~ Ember Rose

[ember-rose]

November 19th, 2023

I didn’t write a lot this week.

I’ve felt very down, very defeated, and very burnt out.

I hate being told “you’ll get better.”, or “it’ll be okay.” Or even… “It’ll get better.”…

Those are lies. You don’t know that, no one does.

And while I’ve always remained an optimistic person, and always try to be… I’m at a point in my life where I realize those words can be the biggest lies in the world.

A year ago… I wasn’t near as sick as I am. My only real problem was a few seizures. I worked, all my natural supports were there… and my friends too.

This year… I am way sicker. I have 5x the seizures I had a year ago… with medication. My lungs are actual trash and my heart is so overworked it’s beating in triple time. I can’t work, my natural supports; one is partially around… the other is gone. Most of my friends are gone too.

I got assaulted.

I got my bike stolen.

I lost my home; my happy place.

I watched someone fall through the cracks of addiction for the 5th time in my life.

I got sicker.

I lost all of my friends, and then got backstabbed.

That’s just one year of my life. One.

You can’t say “be happy for what you have” when nothing I have ever lasts long enough. I’ve had ONE person stick by me, and that’s it. And even then, I had to watch them go through horrible moments of their own life.

It’s a long ass post tonight but - I’m sick of people telling me it gets better when honestly? I feel like that’s such a lie some days. I’m also sick of people completely misunderstanding my needs and wants.

More importantly, I’m so damn tired of losing everyone I ever cared about.

At this point, I just don’t wanna make new friends or meet new people cause they’ll just hurt me or leave… life seems like it would be better alone.

~ Ember Rose

[ember-rose]

November 13th, 2023

I think today was a pretty good day.

It was relaxing and lowkey, though my memory was really skewed and I felt like I was having a hard time speaking.

A downside to epilepsy - however I have some very small hope that this other issue doctors seem to be on to might help fix things a little.

Or it won't, I don't know. In the world of the chronically ill, here is the first rule:

#1: NEVER tell them they're "GOING TO" get "BETTER! You don't know that, neither do they, and from my personal opinion...

I do not like being given false hope.

ANYHOW, going back to a better note - I've become like the rest of society and began to decorate for the holidays in early November.

I got a tiny tree for my room and some lights.

My friend named him 'Douglehiem"; which means 'Douglas' in Czech. (I hope, I used Google Translate lol).

He's not finished being decorated, but when he is, I'll add a picture to my blog.

Anyway, I think that's all I want to write tonight.

Peace out, homies!

~ Ember Rose

[girljournal]

new week : begin again. stay positive. set intentions. leave last weeks negativity behind. be kind to your mind and body. drink your water. don’t skip meals. meditate. move your body. make time to do things that makes you happy. be productive ☁️🦢🌸

[lifblogs]

Let’s stop celebrating pain. Let’s stop being proud of chronically ill/disabled people when they “push themselves.” Let’s stop acting like listening to your pain and your body and your needs is giving up. Ableists, just stay out of the fucking discussion. We’re not your trophies to put on pedestals when we do what you want or “act normal,” and we’re not your garbage to be spit on when we have bad days.

[bisexualseraphim]

How people think I am when I say I’m autistic: Hello foolish neurotypical! Would you like to— GET OUT OF MY CHAIR THAT’S MY CHAIR! Would you like to watch me instantly solve some calculus equations? :)

What I’m actually like: Hi! (Oh God why did I say that? Idiot. They probably think I’m so annoying now. Fuck, I never think before I speak. This is why I’ll never have any friends. I’m doomed.)

[catmat]

I know my limits. I don't pay attention to them, but I know them.

[classycookiexo]

[ember-rose]

November 12th, 2023

I think I’m finally learning what being the bigger person looks like.

No grudges.

No drama.

No back-and-forth.

Just space and time.

I might’ve mentioned before that I’ve had quite the run with kids my age, and I’ve lost a lot, albeit gained friends as well.

My circle was a lot bigger during the summer, but I’ve realized - having a big circle of friends doesn’t matter to me.

I’ve got my people, they know me, love me and accept me - that’s all I need.

But, to paraphrase; I had a really awesome day with a really awesome friend. Im really grateful for this human. They’re the kindest, sweetest and most loving human you’ll ever meet.

Anyway, I won’t keep talking too long since I am really tired but -

I hope your day was good!

~ Ember Rose

[azztiph]

Self destructive behavior pertaining to disability isn’t talking about enough

Forcing yourself to do activities that you know will hurt your body is bad!

Making yourself not use your mobility aid when you know you need it is bad!

Not taking your medicine because you want to get worse or just don’t care anymore is bad!!!!!

I think that mental illness can definitely manifest differently for disabled people. It’s not rlly talked about because this all stuff that ableds see as inspiring or us pushing through. It is just harmful behavior.

Since every single disabled person is or has been mentally ill this stuff is just seen as normal.

[invisibleoctopus]

chronic pain culture is not being able to relate to the "lets take ibuprofen together" meme because ibuprofen hasnt worked for your pain since you were like 10

[ember-rose]

November 11th, 2023

Today has been a very big reflective day for me.

For myself, in the sense that I understand there is nothing anyone can say or do or advise that will change things for me; unless they’re a doctor.

Grief is part of being sick.

But I’m learning that the longer you are sick, the harder it is on your mental health… especially if you’re like me and you try to hide everything under a smile for most people.

Not only is it harder on your mental health, it’s harder on your relationships; mostly with your friends. In the last year, I’ve gone through so many friends.

Maybe we just weren’t a good fit, but I know that some of them fell off because they couldn’t handle me being sick.

Because of this… honestly, I’d rather sit around a group of grown adults talking because at least I know those adults wouldn’t judge me.

And maybe part of it is just that fear of knowing at least one or two of my friends already has one foot out the door and will probably be gone by the holidays.

All I can say is, I think I either care too much or not enough.

And I’m starting to understand how being sick impacts friendships.

I wish I could go back to just being around grown adults, kids my age are brutal.

[int0theabyssknownaslife]

I feel like something that's not overtly ever discussed is how most younger disabled people miss out on a lot of "normal" social experiences.

Which in turn is very isolating.

Like attending classes in person or going to clubs or gatherings. It confuses me how people meet others in that regard when a lot of events where one meets people never occurs.. food for thought I guess