Last post

Hey guys!

My new phone arrived today, unfortunately I was unable to gain access to the email I set this account with & as I don’t know the password I will no longer be able to post here.

I hope you will continue following my journey on my new blog:

Diariesofanexballerina2

Thank you for always being a listening kind ear when I needed it❤️

New account

Hey guys,

I created my personal tumblr over 10 years ago, unfortunately I don’t remember my password. The email I made my account with has since been closed due to hacking.

I’ve been posting via my phone which needs replacing, soon. I’m afraid I won’t be able to log in once I get a new phone due to the fact that I don’t know my password & can’t reset it.

I am going to be making a new blog in the next few days & I’ll share the name here. I will continue to post here until I get a new phone, but this way once that happens, you’ll all know where to find me☺️

P.S. - I started this blog 7 years ago as a newly diagnosed young adult with RA. I was scared and I needed to vent to people who didn’t know me personally, I never expected this blog to grow past 10 followers, let alone to be asked for questions about my life. I know I’m not a hugely popular blog but just know I’ve noticed everyone who follows me & im greatful for you.

UPDATE: my new account is: Diariesofanexballerina2

Thanks for joining me on my journey!

-Allie

People who have symptoms but no official (or unofficial) diagnosis are just as welcomed into the Ouch Community as anyone else. I don’t care if you’re in the “tummy hurted for too long” or the “i have no arms or legs, my skin is made of paper, my bones are made of glass, and I have the most advanced Disease ever” category.

The community is “it hurt and is now my life”

Turns out the “it” in “it is what it is” is diagnosable.

Pov: you believe in both Modern Western Medicine and Herbal Medicinal Remedies can help, and you’re not sure why people can’t use what works best.

Its okay to get worse. Its okay to acknowledge when/if you need more help.

Going from a cane to a walker to a wheelchair is not downward progression to becoming useless or lazy.

Sometimes it takes even more strength to admit you’re doing worse, than to pretend you’re doing better.

When someone tells me I should be positive about my chronic illness:

One of the many things that can suck about being chronically ill is that your life can be, on all counts, amazing.

Loving family, a cute puppy, comfortable financially, a nice house, working cars.

But you still feel like your life is horrible.

You still feel as if life has treated you unfairly when to other people, your life is amazing.

“You should be grateful.” the voices of your peers and doubts tell you. “At least you’re not living on mats in a mud hut.”

But they don’t understand.

The pain that is trapped in my body doesn’t care about what kind of car I drive.

There is no amount of physical comfort on this planet that can help me.

My illness doesn’t care what my life has to offer, it only makes me ill.

Being chronically ill is lonely, painful, and one of the worst kinds of existences there is.

Dying with no death.

Living with no life.

Do wanna know why us spoonie have trouble telling people we’re sick?

Because we were raised by parents who were angry and who doubted us when we wanted to stay home from school cuz we were sick. We were surrounded by nurses and doctors who told us we were overdramatic or crying too much. We had elderly people tell us how happy we should be that we aren’t in pain and should treasure our youth. We had family and teachers look down on us for spending any extended time in bed or on the couch. We had TV shows shame people who weren’t healthy.

We live in a society where being ill is seen as being about how the person who is sick just isn’t doing enough. Unless you have cancer, it’s your fault somehow. You could eat better, exercise, or see better doctors. It is impossible for them to see illness as inevitable.

And it sucks that no one understands or sees what we go through. But society is broken and flawed and has no compassion for us poor spoonies.

SPOONIE THINGS NO ONE TALKS ABOUT PART 22

Distractions are essentials.

Whenever you are not distracted, as a spoonie, that just means that your brain can pay more attention to your pain.

For me, I can’t survive without something to occupy my mind. Something to push out the constant throbbing, something to escape to.

Because when your outer world is silent, your body seems to scream even louder than before.

Just me anxious and restless to be creative but having no energy to do so.

I miss when I didn’t have the will to live for one reason:

Chronic pain mattered a whole lot less.

But now I want to do things, I want to go places, I was to have a life, but I can’t.

I can’t.

SPOONIE THINGS NO ONE TALKS ABOUT PART 20

Brain fog is scary.

Lots of spoonies talk about how annoying brain fog is or even how it can be funny.

And those things are true.

But no one talks about how scary it is to feel like you’re forgetting everything. How uncertain it makes your reality seem, or how unstable it makes you feel.

What if one day, it gets so bad you forget something important?

Like a loved one. Or an important task.

What if one day it gets so bad, you don’t remember again?

It can be so terryfying to not be able to trust your own mind to remember. Mostly it’s the simple things that we forget. But there’s always a fear that we are missing more than that. That we don’t remember what we’ve forgtton.

Because I’m so used to waking up stiff and spastic, I often forget to do the bed exercises my PT assigns. They’re basically stuff you do with a three-month-old baby, because folks with spastic cerebral palsy and infants under three months share the Moro Startle Reflex, and the limb exercises and torso exercises are supposed to strengthen stability so that when the reflex hits we don’t hurt ourselves. And sometimes my body gets…whiny. Like a tantrum. It’s really not that hard to do the cycling legs workout is it?!

I wonder if this will happen more frequently as I get older. It feels like executive dysfunction but sideways.

I’d like feedback from anyone who gets that, no matter the disability.

So apparently after 8 years of torture and living hell and having to remade my life completely and forget about my dreams, I may not even had have fibro in the first place? I could have been cured with vitamin D and calcium tabs??!! 

I guess time will tell if low PTH is really the only problem

Ok guys!! I need your help!

I want all your tricks and tips to get through studying when you’re in excruciating pain and exhausted, because it is the end of the semester as you all know and I need to study to pass my exam but I can’t get my mind to concentrate on anything because of the pain. SOOOO

If you guys have any trick for studying through a flare, please tell me because I need them!

[ Gif of two men walking along a beach. One says, “I’m tired all the time, no matter what the hour.” ]

nat-20s:

The desperate desire to create vs the oh so constant sleepiness plaguing my every action

The enemy isn’t stillness
It’s the mind telling you to go faster