totally-i-chronic

[totally-i-chronic]

Nel’s screaming into the void again! (Potential trigger warnings as I go into detail about my symptoms)

I’m just getting so exhausted of experiencing symptoms so frequently and feeling like there’s no end in sight. All my doctor is doing is trying to pump more salt into me, but I feel like it’s barely beneficial. If I don’t take enough, I’m dizzy and lightheaded. If I try to up it (per doctor recommendation) I get even more violently nauseous than I already am. Balancing it out with water doesn’t help. And now it’s getting hot, so my heat tolerance is messing everything up there, too.

And then there’s the days where other outside factors make these things worse, too. When the PCOS starts ruining my health, the POTS gets worse with it. When the hEDS is making my body hurt, the POTS makes my head hurt. The only improvement I’ve noticed is that I get my chronic migraines once in a blue moon. Every other migraine anymore is related to a POTS flare up.

My current compression isn’t enough. I know I need more but I can’t buy more.

I’m nauseous every time I eat. The first time this happened, the doctor suggested eating smaller snacks throughout the day and that helped. Now that’s just making me nauseous, too.

And I’m also getting nauseous immediately after taking my meds.

I’m just once again feeling so hopeless and helpless and useless.

And I can’t even tell if my doctor’s appointment today’s gonna do me any good.

I’m just done.

[totally-i-chronic]

i’m gonna hold your hand with a glove on when i say this

when disabled/chronically ill people tell you they can’t do something, then that is not your cue to tell them that they can actually or that they’ll always find an excuse if they’re looking for one.

when a disabled/chronically ill person says they can’t do something, sometimes that doesn’t mean it’s outside the realm of possibility, sometimes it means if they (attempted to) do that, they will seriously hurt themselves.

when a disabled/chronically ill person says they can’t do something, sometimes it’s preventative care, and they refuse to do that thing to prevent a flare up from happening/their symptoms getting worse in the first place.

disabled/chronically ill people are not “looking for excuses”, they are giving you reasons why. something they don’t even have to do! so maybe just accept the reasons they give you.

[totally-i-chronic]

hey!! so telling a disabled person that you would rather die or kill yourself than live as them or with their medical devices doesn't make me feel stronger it just makes me feel like fucking shit!! hope this helps!! you saying that doesn't make anyone feel stronger or more capable or whatever, it just makes me feel like there isn't a reason for me to be alive because i'm disabled, it makes me feel like other people think i'm that burdensome to them, it makes me think about the days where i have been suicidal due to my disabilities and how people have treated me, saying that brings up so much in such a short sentence. please never say anything like that to a disabled person.

[totally-i-chronic]

Me lying down: I feel pretty much fine. What am I doing lying around? I should get up and do something. Or at least sit upright, damn.

Me when I’m upright: oh, Jesus. Oh, damn. Oh, RIGHT—this is why I was lying down.

[totally-i-chronic]

Hey, if you’re not as mentally quick as you used to be because of your illness- that’s okay. If you’re can’t think as fast or handle as many tasks that’s okay. You aren’t stupid, you aren’t unintelligent, and you aren’t less worthy of love or respect. It’s okay that your brain won’t or can’t go back to how it used to be. It’s different now, but it’s okay.

[totally-i-chronic]

things to put in a dysautonomia emergency bag/cart ✿

having one place (near your bed preferably) where you can keep all the essentials for bad symptom days has been absolutely key in getting me through those bad days. these are some ideas for what you can put in yours, if you want to make one as well!

prescription medications

painkillers

antacids

anti-diarrheals or laxatives (maybe both)

salt pills or packets

electrolyte drink packets (the powdered stuff)

disposable water bottles

salty snacks

compression socks

pulse oximeter

blood pressure monitor

mini electric fan

ice pack

heating pad

hand warmers

change of clothes

sweatshirt

gum or mints

alcohol wipes or hand sanitizer

disposable toothbrushes

floss

mini hairbrush

dry shampoo

wet wipes

sunglasses

noise-cancelling headphones

[totally-i-chronic]

Last-Minute Doctor’s Appointment.

I’ve missed 2 days of work this week and left early one. That means I’ve only been there for one full day of work this week.

And I just feel like I’m losing every last shred of hope I had.

I’m way more symptomatic than I’ve been in months and it’s taking me away from everything I do and love.

How did this doctor’s appointment go, yoy may ask?

Horribly.

The two practitioners who saw me knew NOTHING about my condition. I had to fully explain it to them.

The PCP who saw me even had me do an EKG and Labs and referred me to neurology for my symptoms that are diagnostic criteria for POTS because they’re THAT “concerning”.

The whole thing felt like a waste of time aside from getting my doctor’s note for work because they didn’t actually do anything to help me. They just tested me and sent me on my way.

My grandmother told me she was being thorough in having me do these tests. I think it just came across as complete cluelessness.

I was not heard by them. They did not understand the connection between my diagnosis and my symptoms. They did not understand that it’s not a heart disorder, but a disfunction of the entire autonomic nervous system.

And they told me that all of this was concerning and urgent because I’m “young”.

Right now I just feel completely invalidated and discouraged and furious all at once.

My disability is valid and it’s real and it’s treatable.

My disability isn’t unheard of. You’re the professional, why am I the expert?

My disability isn’t suddenly gone because I’m young and my youth does not invalidate my disability.

Medical professionals should listen to their patients. Regardless of their age. Regardless of how healthy they appear to be.

Regardless.

[totally-i-chronic]

Today’s just one of those hard days.

You know the ones. The ones where you’re pent up at home, unable to do anything because your body has completely succumbed to your disability.

The ones where the only things you have with you are your thoughts, and not a single one of them pleasant. Where no matter how many people wish you love and light or tell you it’ll get better or offer you prayers in any form you just feel utterly lost.

Yeah, it’s one of those days.

I’m nursing the same flare-up that sent me home from my job yesterday and it feels like I’ll never get better.

I’m scared I’m going to have to give up this amazing job that I love so much, that provides for me so well.

I wish I had more energy to put into my passions like art and music on the oh so slim chance I could use that as income, too, should worse come to worse.

I’m just so over it all. Everything hurts. I’m overwhelmingly dizzy. I need to eat but I’m wildly nauseous. I’m exhausted on every level.

And right now I feel like it’ll never get better.

I can still see that sun of optimism peeking out through the clouds, and I know I want to listen to and take every warm wish to heart.

But right now I’ve got all I can to just make it to my next medication alarm.

[totally-i-chronic]

[totally-i-chronic]

Unpopular Opinion-

I’m sick to death of people telling me I’m “brave”, “strong”, “a warrior”, “a fighter”.

I am not- I’m just a person who never had a choice.

Survival is not strength. It is forced endurance.

[totally-i-chronic]

If you don’t experience the pain that I do every day, you don’t get to judge me.

Not my food habits.

Not my hygiene.

Not my productivity.

Not the clothes I wear.

Not my outlook on life.

Not my goals.

Not my medications.

Not my weight.

Not your body!

You don’t get to decide if I have a moral failing because you think you’re better than me and you could handle it better. Please, try to experience one day of pain like mine. Try to experience one week.

When you’re faced with the choice of not eating and ordering fast food, it’s an easy choice. You choose to eat.

When you’re faced with passing out or wiping yourself down with baby wipes, it’s an easy choice. You choose to be safe.

I am sick of the lectures about what’s good for me, the dangers of seed oils, how medication is propaganda from big pharma, how I’m just lazy and I can take a damn shower.

IT’S NOT YOUR BODY, so get out of my business.

[totally-i-chronic]

GOD I just want to be CREATIVE but all my energy is being used to survive

[totally-i-chronic]

"quick meal for when you're low on spoons!" *involves chopping vegetables* *uses a stove* *includes condiments* *involves letting something set/rest/simmer* *requires multiple kitchen items that will need to be washed* *estimated prep time: 30–45 minutes*

[totally-i-chronic]

You will meet many disabled and mentally ill people who won’t fit into your idea of how a mentally ill or disabled person is supposed to look and act - and the solution to that is to let them expand your knowledge of what mental illness and disability can look like, not insisting that they aren’t actually disabled or mentally ill because they don’t fulfill certain stereotypes.

[totally-i-chronic]

I just need to scream into the void for a solid, like, five seconds.

I’m so tired of taking medications all the time.

I’m so tired of everybody looking at me like I’m fragile even though I am.

I’m so tired of being sick and tired.

I know that accepting and embracing my chronic illnesses and disabilities has made me a stronger and more authentic version of myself but I want nothing more right now than to go back to the person I was before it got this bad.

And I also genuinely hate that I feel this way about myself.

I’m trying so hard to be nothing but a positive light and resource while advocating for the grief disabled people face while refusing to acknowledge my own.

And right now I just need to scream into the void that is my own tumblr page about how I’m exhausted about the fact that I’m visibly unwell.

That I’m INvisibly unwell.

That I am fighting for my life every second of every hour of every day.

And that this all started because I’m on my lunch break and had to take my meds.

[totally-i-chronic]

There are some days that I feel like giving up completely. Just not working on my health, not making appointments, not trying to decide what to try, not worrying about my disability applications. Just laying in this bed ridden life. But just existing is surviving. And I try to remember - I can stand it if I can stand it for 10 seconds. And the next 10 after that. And the next 10 after that. Then I'll tread water and survive.

[totally-i-chronic]

me mentioning to someone that i’m pretty nauseous and them asking me if i need to stay home from an event. girl if i stayed home every time i felt like vomiting i would literally never leave my house ever