#u know what yeah. every day compromises lead up to the System breaking down your boundaries and sense of self and like

[carltonlassie]

Evil is cumulative. It happens. People believe that they've got to do a job, they've got to take on an ideology, that they've got a life to lead; they've got to survive, a job to do, it's every day inch by inch, little compromises, little ways of telling yourself this is how you should lead your life and suddenly then these things can happen. I mean, I could make a judgment myself privately, this is a terrible, evil, horrific man. But the job was to portray the man, the human being. There's a sort of banality, that everydayness, that I think was important. And it was in the screenplay. In fact, one of the first scenes with Oskar Schindler, with Liam Neeson, was a scene where I'm saying, "You don't understand how hard it is, I have to order so many-so many meters of barbed wire and so many fencing posts and I have to get so many people from A to B." And, you know, he's sort of letting off steam about the difficulties of the job.[14] — Ralph Fiennes

[newhologram]

I bond with a lot of customers, they just end up telling me their whole life story, and we always have something in common, no matter how different we are or what the age difference is. Mostly it has to do with living with invisible illnesses and chronic pain and how the world is very ignorant of our strength and resilience against a life of pain. We are so strong that we are like exploding stars on the inside when people KEEP CALLING US WEAK for needing what we need to function at our normal. It pisses us off.  Do you know how hard it is to live what even appears as a normal life when you’re in constant pain? We burn out from having to keep up with other people and function at their level whether mentally or physically, or, well. We really struggle and maybe die because from family, friends, and the medical system we have a HELL OF A TIME getting actual support.

I have people asking me if I’m going to become a doctor because I’m now so knowledgeable about these illnesses based on my experience + obsessively researching medical stuff to try to learn about how my multi-diagnosis body works and how to possible help heal some things

and ALMOST ALL MY FINDINGS

end up being huge obvious simple things like, “does this person have any kind of obstruction of blood or nerve flow?”

Spoiler: UH SHIT how do you say, “grew up with a progressively more and more compressed brainstem and a body covered in adhesions that restricted nerve and bloodflow even more???” which lead to even more damage in just like the perfect storm of bullshit weird illnesses that are so so so misunderstood because our doctors don’t think outside the box and it’s all just a competition/beauty pageant of wankers or just payin’ the bills and nothing matters, just strongarm your vulnerable scared patients into being your long-term cash cow!

The highschool blood drives, I either weighed too little during what I didn’t know were early colitis flares–or they’d stick the needle in and my blood would barely drip out. One nurse looked at me like “is she fucking alive?” and kinda joked about it. Every time I had bloodwork, same thing. My blood was just so slow. No doc clocked this.

Constantly being cold. My friends and family know that it could be a high 95 degree day and there I am covered up and maybe under a heating pad because I’m just frozen on the inside (not to mention the pain). 

Difficulty digesting food as a child. Almost all food just sits in stomach, ferments. Horrible bloating pains and yeah, GAS. Basically age 5 and up. No doc said, “this skinny little weird kid is fuming like a fucking factory, is she okay?!” They just said eh. Just don't drink milk anymore. Problem solved. 

Chronic bronchitis, walking pneumonia, missing school every single year because of it. Reproductive issues, very painful periods, vomiting. Always tired, lagging behind classmates, always zonking out in class or at daycare.

Clumsy and so uncoordinated it fucking hurt, kids are so mean… no adult thought, “um is her brain plugged in right?” But it wasn’t, and so now so many other parts of my body are in atrophy, with lesions and scars underneath, crystallized pain that you can feel and hear.

Like gravel and waterfall, I’ve been rebuilding, slowly, eroding them, the Medusa Marks of my soul manifested in physical form

and they still say it’s invisible??

IT CRUNCHES BITCH

WHY WOULD THIS BE NORMAL I AM TURNING INTO A HUNCHED STATUE because doctors are idiots who poked my swollen malshaped spine that distorted even my vision for several years and said, “yeah weird. oh u have fibromyalgia, narcolepsy, depression, anxiety, colitis, cyclic vomiting that lands you in the ER/urgent care multiple times a year? okay. just wondering, what do u want ME to do about it???” and said I was just the D word and loaded me up on a subscription where cancellation had a serious fee.

(withdrawals are experienced in another dimension)

Anyway, *snaps thumb* Hey, pay attention. If something is fucking weird, you look into it. We have this power and for that we are meant to thrive even if the literal government has its head up its ass. There is a way to be the best you and have the unconditional love and support for when you fall. Why aren’t they here for us, too? What did we do wrong–? We’re just us. We might be different in ways you can’t really “see” but we hurt a lot to be here, and we want the best for ourselves too, because we love ourselves so much and we have survived this long–long enough to make a difference to someone somewhere, anyone anywhere, who may need us.

Be here with us, please, we can make life better. We can learn too, and do what they couldn’t. The medical system shouldn’t only help the people who respond really well to prescription pills–That is a valid treatment but it shouldn’t leave those who don’t respond to it alone to fend for themselves just because it’s all most conventional doctors are willing to try–but we can investigate! We can research and learn so much and do more than our doctors would’ve ever thought to do with their limits, we can work together with them instead of just nodding and taking the bottles. For so long I tried to be a good girl, just listen to my doctors, just take my stimulants, doc said it would help, just take my antidepressants, doc said it would help, just take my sleeping pills, doc said it would help, just take my steroids, the doc said it would help. 

Guys, this is so TMI and I will regret later but I’m just so a n g r y about spending so many years suffering when there was really basic stuff the doctors could’ve done before resorting to pills. Basic as in: hey, is her brain to body connection healthy? 

NO?????

*!! And for clarification: I lived my whole childhood, adolescence, and early adulthood in progressively worsening pain, discomfort, weakness, dysfunction, and emotional instability leading to huge warning signs of something wrong that conventional doctors think does not exist even as a patient withers away into suffering and basically losing their shit during flare ups because that feel when physical pain is literally so unbearable you think eh, dying would be really cool with me right now! I’d miss my cats and make everyone sad, but hey, no more pain! 

**Ultra extra note though: so what was I born with and what was “induced” (??) by the subluxation/compromised flow, we do not know. I was first adjusted 6 months ago and recently again a few weeks ago and now I’m working on breaking down adhesions and strengthening/supporting my body during the recovery process (which could take like... 5+ years and will be a “rest of my life” thing, as recovery is for a lot of us). 

To put it simply, my body now has to MORPH INTO A MORE HEALTHY AND NORMAL FUNCTION.

Basically, when a spoonie is given the smart and effective care needed to heal, they can live more comfortably and have what they need for the flare ups that may still come. For some of us, pain and issues may still be pretty regular in our lives because—our brains and bodies are different, and that’s okay. It’s okay to be born different. Maybe we’re stunted physically and mentally and we struggle, but we can have tools for dealing with this and for being the best we can be, even if we are different. 

We don’t have to just resign ourselves to suffering like I did. For so long I said, “well, my illnesses are incurable. I know if I’m really smart I can at least treat them and manage them so that I can still follow my dreams. If I’m going to be in pain and throw up almost every day, I might as well be trying to do what I love.” 

But even then... my body broke down from it. And from this breakdown, I got even angrier. I thought I was doing everything right. So I got even more serious about my medical research which were already a daily thing. I found out about things the doctors never mentioned. I found out about things that made sense, that seemed so obvious. I found things that made a difference. 

Keep digging, find those answers, get smart, REST A LOT! Don’t skip naps if you are able to. Always better to take the nap. ALWAYS TAKE THE NAP, MAX.

SPOONIES STRONG!!