Eleanore Vs. Broken Pieces of a Whole

Darling whole readers who are not Reeses’ Pieces (what gives Reese the right to claim all the peanut butter candy, anyway? Greedy bastard),

It’s really sad how much I can relate to this Pikachu right now.

My life is so much…muchness. Every now and then I find myself looking back at everything I have been through in my 25 years, and I think, “wow, that’s an awful lot in a very small amount of time.” I’ve been deemed an “old soul” by dozens of people, and most days I feel it, but I can’t seem to figure out if my life has always been this difficult and I just feel it more on certain days compared to others, or if some parts of my life, such as the one I am currently experiencing, are truly worse than the majority.  I suppose in the end it doesn’t matter a ton, does it?

That being said, there are a a few things I need to get out in this post, but to prevent it from being entirely incoherent, I will make a few subsections for each part of the whole. Here we go.

Keeping Up

I’m pretty sure all my readers and subscribers are well aware that I am chronically ill, since, you know, that’s the whole point of my blog and YouTube channel. When I first started I was so adamant about keeping a schedule and doing videos that would always come out at the same time and so on in order to keep myself consistent and motivated. However, I found out very quickly that chronic illness and depression don’t give a single fuck about consistency.

I do not write or film for fame or money. I do it because I am passionate about it, I truly love it, and most of all, I love that it is helping people to relate to someone who suffers as they do. My driving force always has been and forever will be to create in order to not only make myself happy, but to make others happy as well. Since that is my goal, on the days when my physical illnesses or my depression and anxiety do not allow me to create as I wish, I listen to it. Not because I am not fighting back, because holy shit, I am fighting harder than I thought I could.

I listen because I am a very transparent person, and I have intentionally pushed myself to keep that transparency in my blogs and videos. Since I’ve done that, it means that if my heart is not in my content, it will be obvious. While I was hoping I could create a steady flow of videos once a week while I write, the fact is that if I have tons of posts and videos that are uninspired, they’re not much better than emptiness. This scares me because I am told that a constant flow of content is the key to success and reaching as many people as I dream of, but I just can’t bring myself to create for any other reason besides the fact that I simply want to.

I’ve spoken to quite a few of my followers (though I always hope to talk to more) and they are such beautiful and strong people. People like that deserve to receive from me only my most sincere work. Not always best, maybe, because I have a lot to learn about my passions. I can’t promise perfectly formatted blog posts or flawlessly edited videos. But I will always promise you my most sincere and genuine self. I am truly sorry that I can’t be as steady as others in these crafts and that I guarantee I will sometimes have to say, “I was going to make something, but now I can’t, and it is postponed.” But the thing about chronic illness is that at a certain point, I just don’t have much of a choice. For lack of eloquence, I will always be my illness’ bitch; at least a little bit.

Stuck Ideas

I have so many drafts of blog posts it’s absurd. As I said before, I am a very transparent person; this isn’t totally my choice but it is how I am, so I try to embrace it. Even still, there are some subjects that I want to speak on that I just can’t. When I try to write about Father’s Day, Alzheimer’s, my grandmother, and many, many other subjects, I start out strong thinking that it will all come pouring out of me as most words do, then halfway through I’m stumped. I have been told my entire life by 90% of everyone I’ve met that I talk too much and that I’m the queen of TMI (Too Much Information). But somehow there is still so much that I struggle to express, and it drives me insane.

It feels like I am in a mental purgatory, caught between wanting to express a certain subject, yet not having the ability for whatever reason it is to write it out. I just feel like…

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General oflkelrkwlkrwlkw;rwlr;wkrw;gmew;jgwkrkwr;

In general, I am just so fucking frustrated with my entire life at the moment, and I am trying to THINK POSITIVE and BE HOPEFUL and be all those other phrases that people love shoving down my throat. While I know their hearts are in the right place, I kind of want to kick people in the face when I’m being told cliche phrases. Having a positive attitude does help. Having hope is valuable. I have written about this concept, so yes, I understand where people are coming from. I’m also in a bad mood so I may be a bit more of an asshole than normal. But when a person is in immense physical and mental pain and is struggling with every aspect of their lives as I am at the moment, these generalized and watered down notes do. Not. Help. At. All.

I don’t know what the point of this post is, to be honest. I think I became so frustrated trying to write on other specific subjects that I just needed a post where I could explode and rant and ramble. Also pretty sure that 99% of this was just an excuse to use that Jigglypuff picture.

Lately it has been common for me to not have the right words to say, because I am so stressed out that it feels like my brain is melting a little. But one thing I know I can always say, no matter what, is that I am so thankful to those that read my posts, watch my videos, and encourage me to keep going when I feel as if I am Dante fighting my way through hell itself.

I’m so tired of feeling sick, upset, angry, lost, and pain ridden. I am so done with feeling as if the entire universe is bearing down on me. I’m so tired of being scared and financially fucked. I’m tired of fearing for my future and being scared for my grandmother who is literally being driven insane while there is nothing I can do about it at all. I am constantly aggravated and more anxious than ever, always on the verge on a panic attack. I constantly have full blown panic attacks. This is not being helped at all by the fact that I can no longer afford any medical help including pain management which was the only thing to keep me kind of sane. I always feel thirsty and never seem to have enough water in my cup, though I’ve been told countless times this is because I am chronically ill and absorb water like a sponge. My head, jaw, neck, shoulders, spine, back, hips, abdomen, arms, and legs hurt non stop. I feel like I am spiraling and it is terrifying yet I am trying so very hard to hold on.

Please know that I am trying my hardest to fight back every one of my hardships. I don’t know why, but right now I just really need people to know and affirm that. I’m trying so fucking hard. It feels like I am losing a thousand fights, and I’m battered and worn.

But for some reason I just keep going.

love us as we are, see us and we’re holy.
in this shall we shall ever be,
wholly ourselves.
your love will take us far,
praise us and we’ll show you.
from heaven to the glory holes,
glorious and free.

~Erin Mckeown – The Queer Gospel (heard on the Welcome to Nightvale podcast)

 

 

Eleanore Vs. The Brighter Side

Dear readers who most definitely brighten my life (as cheesy as that may sound, it’s alright because cheese is delicious),

A Few days ago I wrote about my “hystaversary,” as my lovely friend Elizabeth calls it; the one year anniversary of my hysterectomy.

While my post was laced with my sadness, I also tried to bring up the fact that I most definitely do not regret my surgery and that ultimately it was the right decision to have it. However, I don’t think I did a very good job of that.

Especially since I suffer from Clinical Depression among many, many other health issues (if you’re curious, click this cheatcode), I fully admit that I can sometimes be a pessimistic little asshole, and that the positive in my life is usually drowned in fear, anxiety, and hopelessness. While I don’t intend to apologize for my post or any of those feelings because both positive and negative feelings need to be acknowledged , I do think that I haven’t quite expressed the importance of the goodness my surgery has brought me. So, I will bring it forth now.

As I said in my post, I still can’t believe how much I suffered for how long. To quote myself, which seems somewhat solipsistic yet entirely necessarily at the moment:

Looking back on my life, I am in awe that for ten years I was tortured to the point of passing out every two to four weeks from my periods. I missed so many events, was nearly kicked out of high school due to truancy, and was bedridden for weeks because I couldn’t use my legs at all and my spine was being crushed. for ten. Years I dealt with this. Now as I fight my remaining illnesses, I do not think I could continue living if I had all this and those periods as well. I used to even dream I’d have to cancel my wedding day because I wouldn’t be able to sit up, let alone walk, because I’d get my period.

That’s only to paraphrase the hell I lived through. The fact that I now no longer have to go through any of that is incredible and I am so thankful that after three doctors would barely even listen to me due to my young age, one surgeon fought for me and pushed for a board of doctors to allow me to have the surgery.

This brings me to another extremely important point: I was told over and over again by family and doctors that it either was not my decision or that I was far too young to understand the decision I would be making. Every time I was told this, especially by doctors, I was infuriated and heartbroken.

For up to two weeks every month, ten years straight, I was incapable of walking, nauseous, dizzy, and my legs and spine were in horrendous pain that would constantly cause me to pass out. When I did pass out, I would often hit my head on either the floor or the bathtub and then the floor. In fact, my horrible periods triggered my Vasovagal Syncope so many times that I now have a Syrinx near my neck, which is a tear in the spinal cord caused by a trauma. My neurologist believes that my constant vasovagal episodes are the cause of that trauma. While I am not cured of my vasovagal syncope and still experience them, they have been reduced by nearly 80% by having my hysterectomy.

So, to go through all that, and then be told I was not old enough at 25 to make the decision was ridiculous. While I understand the other doctors being cautious, the only one I am still angry at was the female OB/GYN that walked in the room, said, “I will not do this surgery because you’ll regret it,” and then walked away without hearing me out. The surgeon that did finally agree to listen to me had a nearly four hour appointment with me, and listened to every word I choked out.

My periods were so brutal that after the hundredth time of being sent to the ER in an ambulance, my male ER doctor, while scrutinizing me overnight, told me, “look, I know that because you are young this is a very hard thing to consider, but you absolutely need a hysterectomy. You are not living a life like this, and if I were you, I would have had one many years ago. I have no idea how you’ve gone this long.” It was only then, after I had told my mother to go home because she always tended to make situations worse, that I confided in the doctor that I was fighting desperately for a hysterectomy, I had to hide it from my family, and that the doctors were questioning the “morality” of my request, so were going to have a board meeting about my case to decide. He then told me, “well, if you need another person fighting for you, I will. You can put my name on the list of people on your side.”

I also said that I would not recommend this surgery only because every woman’s experience is different, so it needs a considerable amount of thought. This does not mean that I don’t think a woman should fight for a hysterectomy if she truly believes that it will improve her quality of life, and that those improvements outweigh her desire to have a child. I am crestfallen that I cannot have children not because I am a woman and because that’s all we are good for (which in my opinion, was how some doctors treated me). I am heartbroken because I am simply a person who wanted to be a parent, and I still can be, just in a different way.

This past Friday I went to visit my darling friend Kimkelly (I always call her by her full name because she sounds like a superhero). Before I left she gave me a colorful bracelet that her four year old daughter, Violet, said was for me. Well, first it was for KimKelly, but apparently my visit made Violet think I needed it especially badly. I didn’t know that she would be right. I went to work after my visit, forgetting I had the bracelet on me, until I was folding towels in the back of the salon and I saw it decorating my wrist, just as I was fighting back tears.

I thought of all I had been through for someone fairly young. But I also thought what a lovely coincidence it was that on the anniversary of the day I officially gave up my ability to give birth for the sake of my health, I was reminded that I didn’t exactly have to give birth to have a child like me, or even love me. In fact, it reminded me of all the babies, toddlers and children I’ve gotten along with in my life, and how much I loved all of them though they were not my own and only temporarily in my care. If I have that much love for Violet, all my friends’ children, and all the children I’ve nannied, just imagine how much more I can give to an adopted child I can call my own.

So, long story short:

  • I’m elated that I got to have my hysterectomy and that it has spared me from more horrible suffering.
  • Having my hysterectomy has improved my physical and mental health by lightyears; while it has not cured me of everything, it’s one less ailment on my list, and not fainting every two weeks is fabulous. It also means I’m at less risk for more spinal cord injury because I won’t be subjected to as many falls.
  • I was most definitely not too young to make this decision, especially on my own, and while for the third time, it is something that needs to be thought about tirelessly by the patient to make sure they want it, I urge doctors to take the time to understand their patients better and truly listen.
  • I will be heartbroken about the not being able to give birth thing for a while, but not forever, because I understand that the consequences of keeping that ability would have made my life significantly unhealthier and could have possibly put someone else’s health (my child) at risk. The best possible thing I could ever do for them is to not allow them to end up suffering as much or even worse than I have.
  • I really, really want some fucking ice-cream. For…uh…medical reasons.

Sometimes, I wish I was brave.
I wish I was stronger, I wish I could feel no pain.
I wish I was young. I wish I was shy.
I wish I was honest, I wish I was you, not I.

‘Cause I feel so mad, I feel so angry.
I feel so callous, So lost, confused, again.
I feel so cheap, so used, unfaithful.
Let’s start over.
Let’s start over.

~I Feel So – Boxcar Racer

 

 

New Video! Eleanore Vs. Being an AmbiWHAT?

Dear darling humans!

Do you know what to do when you are convinced you are an extrovert your whole life only to find out later that you aren’t? Me neither!

So, I made a very short video about it. Watch it here!

I believe that this whole personality subject is a very important part of life, and I will probably write and Vlog about it more in the future. This is just an overview.

I hope you enjoy my video, and might even like it so much that you subscribe to my YouTube Channel, so that you can not only see all the videos I put my heart into, but so you can also make me jump up and down in my kitchen and sing, “I got a new subscriber! I got a new subscriber!” While my boyfriend slowly backs away in fear.

In other news, Friday is a somewhat important day for me; the one year anniversary of my hysterectomy. I have been crafting a blog post about it the last few days, because I have so much to say regarding it all. That post won’t be as lighthearted as this is, but just like the rest of life, my blog is a pile of good things, bad things, and all things in the middle. It is a reflection of the life I am living.

From the bottom of my heart to the top of my brain, thanks!

 

 

Eleanore Vs. Getting Better

Dearest humans,

It is only Wednesday and the week has already torn into me. The stresses of mental and physical chronic illness are not easy to handle any week (Click this Cheatcode to learn exactly what I suffer from), though I try my best, but every now and then those stresses, plus life stresses, plus everything else equal a broken, frightened Eleanore.

I tried for hours yesterday to film my video for the week, but the lighting was all wrong and I didn’t look right and the words just would not come out of my mouth correctly. I went to my job and pretended to be normal, came back home, and after a day of numbness, suddenly felt everything.

As the numb hopelessness descended upon me yesterday, I kept hearing the words of one of my very closet friends in my head.The week after my grandfather died,  I was losing my mind because it was filled with not only the regular anxiety and depression but also intense, heartbreaking grief, I was crying to him about how I just couldn’t seem to handle my life anymore. I told him a phrase I have said constantly in the past year:

This is all too much for just one girl to handle.

When words are insufficient to describe my pain, and I feel as if I am rotting away, this is what I tell people. I don’t know how I formed the phrase, but it has been useful.

My darling friend, a sweet and endlessly compassionate person who has several times cried for me himself, replied:

I don’t even know what to say. I feel like life gets better for everyone, and it has for me, but with you, things just never seem to improve. It never seems to get better for you.

I think anyone telling me this would feel far from great, but it hurt even more coming from someone so close to me, especially one who is ever the optimist. I broke an optimist, you guys.

I know he didn’t mean the phrase to hurt me, he was simply being open and honest as I always encourage my friends to do. Yet these words have since been on repeat in my head, and get louder the weaker and less capable I become.

I have said this a thousand times before and I will say it a thousand times again. This past year my life has changed more than ever, and a good deal of that change has been for the worse. Much of the change has been for good, too, but because I am a ridiculous animal called a human, the negative must always outshine the positive in my brain. Being a puppy would be so much easier.

If someone asked me to name everything wrong with my life, I would easily list off at least a dozen reasons. If I were asked to do the same with everything right in my life, I would falter. This doesn’t mean that I am not grateful for the goodness in my life or that I am insatiable (I actually wrote a whole post about this and I encourage you to read it here when you are finished with this one). It does mean that I am suffering in several very large ways.

In the times that I feel hopeless I am discouraged and blinded by darkness. I tell myself that no matter how hard I work, I will never be good enough, and that all that I create will never be accepted or appreciated by the world. I tell myself I’ll never be as healthy as I’d like to be or as pretty as I dream of looking, and that I am perpetually doomed to be miserable no matter what I do. What I am saying is, to myself, I’m a total asshole, which is sad considering I am very different towards others.

Despite aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaall that, I still refuse to believe that I really am doomed. As I said in my last video (again, if you haven’t seen it, watch here, because it’s great and I am not bias at all) in the past year  I have began to see my life as an extremely odd video game. long, long ago (as in the 90’s), in a galaxy far, far away (as in The Bay Area), I played a game called Pitfall! 

In the game you play as this little asshole named Pitfall Harry, who has to run through the jungle to collect items, but a range of obstacles get in the way. Tar pits, water holes, creatures, you know, jungle things. At one point, I remember 8 year old me wanting to throw my PlayStation One out the fucking window because I could just not get across this one particularly massive tar pit. It was one of the most infuriating things 8 year old me had faced in a video game; however, I just kept jumping again, and again, and again and againandagainandagainagainagainagain okay I think you get the point.

Now 17 years later after tiny Eleanore played Pitfall! on the very first Playstation, I surprisingly find adult Eleanore in the same situation. This past year I feel like I just keep trying to jump over the tar pits but I never reach the other side. I just keep failing, falling, then trying again.

There is that famous phrase that says that doing the same thing over and over and expecting different results is insanity. In many ways, I agree with this reasoning, but in many other ways I also don’t. Sometimes you’ve exhausted all your options and there is only one way left to go. Other times, the hardest way still is the best way, and every now and then, you really do have no other choice but one single option. Not having options can make a person feel helpless and hopeless, as if they’re never going to succeed because there’s no logical way to do so.

Currently, I’ve either run out of options or never had any to begin with in terms of dealing with everything wrong with my life. And so, I just keep jumping and falling, jumping and falling, until finally, one day, I hit that other side and begin running.

For all my hopelessness, all my fear and all my pain, I really still do believe that things will get better. They just have to, even if it takes a million more falls.

Psh. And they say video games don’t teach you anything.

Hey you,
what’s with those eyes, what you been thinkin’?
Hey girl, spreadin’ your wings,
The world’s awaitin’ to let you in.
That smile, a mile away, the colors collide.
Hey you, pick up the reigns,
And come through my window, and don’t be shy.

 

Eleanore VS. A Non-Existent Fix

TW: Depression and related things

Dear readers,

https://rabidcentipede.files.wordpress.com/2011/12/tumblr_lutpq9opj81qj69hdo1_500.gif?w=495

 Last night, after glob knows how long of being anti-social because my life went all Mortal Combat on me and ripped my heart out, we finally had friends over for some well earned fun. I had an incredible time and I adore the friends I have come to know in Missouri.This morning, I woke up with an aching heart, and within five minutes was in tears. The worst part of depression really is everything.

One of the many characteristics of depression that far too few understand is that when a person suffers from clinical depression, even the most beautiful days can be saddening and awful. It isn’t due to being ungrateful or apathetic. It’s due to being internally beaten to death by an illness that is not entirely in my control. On the outside, I seem cold, quiet and removed. On the inside, I am screaming, writhing, and being dragged under water by the hand of depression.

I am trying harder than ever to make something genuinely good out of my blog and YouTube channel. But between all of my illnesses (Use my Cheat Code if you’re curious) it is a mighty struggle. Making videos, especially sincere, articulate ones that I am hoping will reach people that will benefit from them, is difficult in itself. I honestly don’t know how some YouTubers make videos every single day (but then again it might simply be because they’ve attained expertise over their years of making them).

The editing, writing, filming and Photoshopping little aliens, however, is only part of the struggle. The rest comes from the fact that many days, while I have some of the mental drive, my physical being never seems to be very driven about anything. Between all my pain and all my depression it isn’t that my body doesn’t want to do anything, but it feels as if I literally am incapable because every bone in my body weighs about five billion pounds. Then there are also days like today when my brain too seems to weigh more than the rest of my head can bear. Whichever day it is, I am fighting tremendously hard to not let it keep me from doing what I love. I’m not sure if I am winning or not, but I assure you, I am fighting with all I’ve got.

Throughout my life I have rejected most anxiety and depression meds as they give me other awful symptoms. The last few weeks, though, I have become desperate to try some. Yet my desperation is futile because in three weeks I lose my health insurance and will not have any to replace it for the foreseeable future. Part of me blames myself for waiting so long, and most of me is angry about how fucked up and corrupt our medical system is; but that is a horse of a different color, a post for a different time. Presently, though, it is awfully discouraging.

Since starting my new job, as get ready for it each working day, I can’t help but think to myself, “time to pretend like I am a normal person.” The people I work with know I  have many allergies and arthritis. They don’t know about the other ten disorders, diseases and illnesses going on inside me, but they’re all present, all the time.

Whenever I write a post about depression or about anything that’s difficult to hear about, I find myself wanting to instantly apologize. I want to write, “I’m sorry, I’m not usually like this,” or find a way to suddenly brighten everything up.

Why?

This afternoon as we drove down the freeway listening one of my favorite albums, “American Idiot” by Green Day, Billie Joe’s anthemic, electric voice sang out:

Welcome to a new kind of tension.
All across the alienation.
Where everything isn’t meant to be okay.

That last line sunk deep into my mind. “Where everything isn’t meant to be okay.”

The more I learn about what it means to be a human, the more I am starting to realize that everything isn’t meant to be okay. When I tell someone I am depressed, they automatically want to fix me and make me better. I truly appreciate the effort those I love go through to cheer me up, but I’ve never had someone tell me that it’s alright to be more depressed today than usual because I just can’t seem to handle it as well as I normally do, even after all the joy I experienced just a day before.  I’ve never been told that it’s not my fault that I’m depressed. I’ve never had someone be brave enough to jump down into this hole with me, if only for a moment, and instead of trying to fix me, felt and shared my immense pain.

And most of the time, that’s what I wish for more than anything.

Why do disabled and chronically sick people constantly feel the need to apologize? Why do we carry an enormous block of guilt on our shoulders? It’s simple: because we have so often been told what burdens we are, how we “kill” moods and are “downers.” We are constantly told that because we struggle in ways that are terribly difficult and not totally understandable, that we are a burden on our society.

Well, fuck that.

I do not believe it is okay to be sad forever. I do not believe it is okay to constantly unload on your friends everything that you struggle with, without allowing them the same graciousness in return. I do not submit to the idea that a disabled or sick person is allowed to become solipsistic because they have mountains of pain to endure daily.

Fuck that, too.

However, I do believe that everyone deserves to be heard, to have someone jump down into the dark well of sadness, depression, or anxiety and have empathy shone onto them, gently and compassionately. I absolutely need to be cheered up, both by myself and those who love me. But maybe the cheering up part, which I believe to be an immediate response to when people want to “fix” me, comes too soon. Instead of someone who wants to helping me asking themselves or I, “how can I fix this?” maybe they should be asking, “how can I help you feel this?” Sometimes, the answer will be to talk. Sometimes it will be to listen. And other times it may be to lay in bed watching Disney movies with a large bowl of ice cream.

Of course, depression, along with every other illness I carry most certainly needs to be ultimately cured. That goes for just about every health issue in existence, really. Every day I hold a sliver of hope in my heart that things such as depression, Celiac Disease, Chronic Fatigue Syndrome, Anxiety, and other diseases and illnesses will one day be abolished from humanity. But none of the people that love me, let alone doctors at the moment, are able to give me the ultimate cure today. That one true fix, for now at least, is non-existent (though hopefully hurling towards existence as fast as possible)

If that’s the case, which it is, accepting it and aiming for understanding and compassion rather than a solution is healthier for everyone.

Ice-cream fixes are good for now, too.

P.S – If you have not yet watched my most recent video (or any of my videos) click here. I promise they’re all far more cheerful.

P.P.S – I just made a Twitter account where I will be posting things for reasons. If you would like to find out those reasons, click here. 

P.P.P.S –  From the bottom of my heart to the top of my brain; thanks.

Roaming ’round your house, wasting your time.
No obligation, just wasting your time.
So why are you alone wasting your time?
When you could be with me, wasting your time.
Well, I’m a waste like you, with nothing else to do.
May I waste your time, too?

~Sassafras Roots – Green Day

 

 

Video: Eleanore Vs. Hallucinations, Vasovagal Syncope, and Weird Brain Things!

Dear humans,

New Video!

It contains spaceships and talk about lasers maybe shooting me in the face, that’s a good enough reason to watch, right? I hope? Maybe?

Things to note for this video:

I don’t know why I did not mention this in the video, but I primarily made this video because for the longest time I thought that I was the only one who had dreams when I past out, and also the only one who would have a syncopal episodes from particular triggers. However, through the magic of Google, I found that I am most certainly not, and I really wanted to share this so that others such as myself realize they are not the only ones, either.

When I describe the vasovagal episode I realize I do a really poor job of explaining it in full: I didn’t notice until it was far too late, so I’ll write it here.. To be more specific, when I have an episode, my vision goes static, I feel hot, nauseous, and like my stomach is turning. I also get a salty, medical smell and taste. When I get these symptoms it can be anywhere from a few seconds to a half hour before I actually lose consciousness. THEN the tie fighters come. ( I swear I’ll get better at this in the future!)

I am not a doctor, I only know my facts from my research and own personal experiences, so while I hope that my videos are helpful and interesting, I cannot say for an individual person what any problem may be. If you don’t know if you have seizures, epilepsy or vasovagal syncope, talk to a neurologist. They help. I also didn’t even know that auras seen during migraines are technically a type of hallucination – I always see rainbow worms before one of my chronic migraines set in!

Also!

I have decided that I am going to attempt to make it so that I have a new video every Friday.That’s the goal, and I am working very hard to make that happen. Unfortunately this week I overdid it and am now feeling more sick than usual, but I am fighting back as hard as I possibly can, because this is something that I have put my whole heart into.

From the bottom of my heart to the top of my brain, thanks for watching, reading, and being.

Do you believe in hallucinations, silly dreams or imaginations?
Don’t go away cause I feel you this time.
Don’t go away cause I need you there this time.

~Hallucinations – Angels and Airwaves

Eleanore Vs. Her Sickly Stars

Dear clusters of stardust that have formed the awesome people reading this,

The past week has been one of the best I’ve had in the last year. I started my new job as a receptionist, and despite work being extremely tasking on my mind and body, and coming home as a zombie lump each day, I am hoping it’s a job I can keep at least until I find a better way to survive.

I also launched my new YouTube Channel which is a goal I’ve had for at least three years. Finally accomplishing that was an enormous deal to me, and I’m more than thrilled about it.

Making YouTube videos is hard work in itself. I have to write scripts, edit them, film god knows however many times my perfectionist tendencies force me to, edit THAT, create text, images, and whatever else I find the video is in need of. It’s exhausting and certainly frustrating considering I am both a n00b and without many of the resources I wish I had, such as proper lighting or a real camera.

But good lord, do I fucking love creating.

I’m sure I have mentioned in my writing before that the last six years I’ve lost most of my passion and desire for life. I just went into survival mode, doing the activities I was told a human at my age should do. At 25, I should be either just finishing up college or just starting a job that would catalyst me into my lifelong career. At least, that’s the bullshit we ‘re told. I know a large amount of people who have done this, and some of them are even married with children as well, which is wonderful for them.

And then there’s me, who spent three hours today designing an 8-bit TIE Fighter for a YouTube video.

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But. I mean. Look at that. That’s pretty fucking rad, you guys, and I’m not even a little bit bias.

While I may not be doing what some would consider appropriate for my age, for the first time in a painfully long while, I am certainly doing something that I absolutely, honestly love. Creativity and connecting with others have always been my nature; and after a quarter of a lifetime, I found a way to use both to make something new and positive to throw out into the ether.

Though I am happy when I am creating, the moment I stop being distracted by it, I am flooded by what I always feel; pain all over my body from my head to my toes, anxiety, depression and worry. It eats at me every second, and while there are times I stop paying so much attention to it, it’s still there, quietly nibbling away at my being.

It’s extremely disheartening to realize that even at my happiest, I’m still in an overwhelming amount of pain. No matter what I do, I’m ultimately still an unwell girl, made of sickly stardust.

I felt terrible when the second my boyfriend came home from a long day of work, my sadness and frustration erupted from my lips. “No matter what I do, I’m still hurting. I’m still in pain and it never stops, and even if I get a little better somehow, I will still always feel this pain. I remember feeling the pain in my back and my jaw when I was in first grade…I have truly been sick my entire life and I don’t know anything else. And it really fucking sucks. Whether I’m ever a receptionist or YouTube creator or mother, I’ll always be that, plus being sick.”

I love my boyfriend dearly and he is one of my very best friends, but he isn’t always the greatest with words. I’ve learned to try to accept him for that. Yet this evening, he said the most incredible statement that hit me like a lightning bolt.

“Many of the things you’ve done not even healthy people can say they’ve done. Instead of saying you’re doing all these great things plus being sick, why don’t you think of it as doing these things in spite of being sick?”

Isn’t it a little bit insane how two words can change an entire world?

As this night has gone on I’ve finished everything I’ve had to do. Laundry, dinner, YouTube stuff, etc. While I’m pleased to finally fall into my bed, spoonless and exhausted, the less I occupy my mind with, the more I feel the pain. My back is braced and feels like it’s lined with razors. My jaw is tight and stressed, and I can feel how one side hangs lower than the other. My mind is racing with everything that is problematic in my life and dripping with dozens of worries that make me feel fragile and shaken. My legs feel weighted with concrete. I am feeling a dozen or more horrible sensations all over my body, and while most days I’m good at handling it, tonight I feel like I want to rip myself out of my skin.

But I can’t, because I am not a reptile.

While I am proud of all I’ve accomplished this week, which has honestly probably been more than I have accomplished since moving, I feel awfully sick, and though I have been trying to less and less, I still find myself wishing that I was a “normal” girl (by that I generally mean averagely healthy). No matter how I wish though, I am not a reptilian Disney Princess. I will never be average or standard. Not in personality, not in timeline, and certainly not in health.

I truly believe that one of the hardest parts of being chronically ill and/or disabled is, aside from the obvious, accepting one’s self for all they are. This has been one of my largest battles. I’ve gone from complete denial of my disabilities and illnesses, to thinking that I maybe have some things wrong but they aren’t “that bad,” to finally getting to the point where I am not in denial, but I am not drowning in self pity, either (at least, not usually, but everyone is allowed a day or two of self pity). Acceptance is something I will probably be fighting for as long as I live. The fight is definitely worth it.

I realize how hypocritical that is considering I made both this blog and my YouTube channel to help others accept themselves; but honestly, I am starting to think I don’t have to have everything figured out in order get a message out into the world.

My sick little stars and I are just trying our hardest to make the best out of all we have been given. Being creative may not cure me of my illnesses and distracting myself may only act as a band-aid for my struggles.

But if I can learn to do what I want, create, and as my friend says, create the “new normal”, all in spite of being sick,  I will never be okay.

I’ll be so much better than that.

A moment of love
A dream
A laugh
A kiss
A cry
Our rights
Our wrongs
A moment of love
A dream
A laugh
A moment of love
A dream
A laugh

~Sweet Disposition – The Temper Trap

 

Ellie Vs. YOUTUBE?!

Dear humans!

The past two weeks I have been hinting that I have been working my butt off on a new project, and the time has come to release it into the wild (the project, not my butt, mind you).

I’ve just started a new YouTube Channel!

Naturally, it’s called Sickly Stardust, and will be an extension of my blog. I’ll talk about some of the same things, many different things, and a whole lot of everything. I have wanted to do this for such a long time, and I am so thrilled to have finally gotten the courage to act upon it.

You can watch my very first video here!

I’ve also started a Facebook page where all my Blogs, Vlogs, updates and things I like will be posted.

Click here to be transported to the book of faces!

I’ll still be writing frequently. While I am not entirely sure what my schedule will be especially since I am starting a new job tomorrow, my goal is to have one video and one blog per week.

I say it in my video but I’ll say it again, thank you so much to all my friends and readers who have inspired me to chase a dream while being all that I am, sickness, oddities and all.

I will write a true blog soon, promise!

With all my love,

Eleanore

Best,
You’ve got to be the best.
You’ve got to change the world,
And use this chance to be heard.
Your time is now.

~Muse- Butterflies and Hurricanes

 

 

Ellie Vs. A Certain Kind of Tomorrow

Hello dear friends.

This one will be a shorter one than normal because I am exhausted beyond belief. I haven’t been sleeping well, mainly due to lots and lots of anxiety attacks about a few different things. I can write about that later. One thing at a time, right?

A while ago I wrote that after suffering a great deal due to constant attacks of pain in my abdomen, and being tested for all kinds of things, it was suggested that I may have a C1 deficiency, also known as Hereditary Angioedema. The disease is pretty scary, and one of the three main reasons I have been having a lot of anxiety attacks lately.

Tomorrow, I get to go to the doctor to see if I have the scary new disease, and if so, what I’m going to have to do to get it under control and improve my life. If I don’t have the disease, that will be good, but also terrible, because while I’ll be happy to not have to add another disease to my list quite yet, I will still not know what is causing my sickness. As I said before, in a lot of ways, I feel like I may not really win either way. However, I am trying to be positive. Currently failing at it, but I truly am trying.

I have had many tomorrows like this in my life. Tomorrows where I may or may not be diagnosed with something, where I have a daunting surgery or procedure that may or may not make me well, or where I go to a new place that may or may not help me. In a lot of ways, my tomorrows are much like the whole Schrodinger’s cat situation. I have two very big possibilities at the same time. Schrodinger’s cat may or may not be alive inside the box after being exposed to poison. Ellie may or may not have a new disease. We don’t know until we go to find out, whether it’s opening a box that has a potentially dead cat instead, or going to the hospital. Until we actually experience what happens, both possibilities exist at once.

I feel that this particular thing is something that everyone can relate to. For me, these tomorrows are mainly regarding my health, but everyone has those events in their lives, whether it is with their health, career, family, passion or anything else, really. We constantly face multiple possibilities at once, and the idea that whichever possibility we choose can change the entire course of our lives is a pretty frightening thing to think, isn’t it?

The only difference in my particular situation (as well as the cat’s, come to think of it) is that unlike most other situations in my life, I don’t actually have a choice to either get a disease or not. However, I still have both possibilities in front of me. In my opinion, that’s really twisted. Life is a real weirdo sometimes. But like I have said before, while I don’t have a choice about whether or not I get the disease, it’s entirely up to me how I react to either news.

I expect that one way or another, I will be disappointed tomorrow. I plan on coping by going to my favorite Gluten Free Bakery and eating all the things.

Well. Here’s to tomorrow. Wish me luck, or an alive cat. Actually please don’t wish me a cat…I’m very allergic. Just go with the luck.

I missed the last bus, I’ll take the next train
I try but you see, it’s hard to explain
I say the right things, but act the wrong way
I like it right here, but I cannot stay
I watch the TV; forget what I’m told
Well, I am too young, and they are too old
The joke is on you, this place is a zoo
“You’re right it’s true”

Hard to Explain – The Strokes

Ellie Vs. The Monster Named Anxiety

Right after I wrote my very first blog post last night, I was attacked by this big, ugly monster named Anxiety. I am very familiar with him, and he’s sort of a jerk. Well, sometimes he’s a big, ugly monster. With sharp teeth and a large, snotty nose. Other times, he’s a firefly fluttering nervously about in my dark room keeping me from sleep. Or sometimes he’s a nasty, sharp thorn stuck in the side of my brain, constantly reminding me of the most painful parts of my past. But a lot of times, anxiety is just a towering shadow lingering over me, which I have no choice but to stare up at while I internally scream, cry, and all around freak out about all the “What If”s and “But!”s and “Should I Have Done Something Different?”s and “What is Going to Happen Now?!”s and “Please, make this stop!”s. And then sometimes, someone asks if I am okay. And I usually lie and say, yes. I am completely fine, because if most people knew what I was thinking and how hard I was thinking about it, they’d probably call me crazy. And right after I say that I’m fine, anxiety swallows me whole. Well, I hope I was delicious.

Having anxiety, for me, is weird. That isn’t the most eloquent way to put it, but really, it is. And it is even weirder when it’s paired with extreme compulsive thinking. Everyone at one point or another thinks about the silly things in their past that they have done, or about that really freaky looking bug they saw on television that made them cringe for a moment. And those thoughts bring up emotions and other thoughts. I think that’s just what our brains do, which I understand considering our brains are these massive vaults of memory and information. That’s a big job to have, so naturally from time to time, things are going to escape and wander about. It’s cool brain, we forgive you.

Here’s where it gets weird: While we forgive the brain for once in a while slacking off on the job, there is a difference between thinking about things for a bit of time and moving on, and thinking about one of those things on repeat for three weeks and letting it effect how you eat, sleep, work, and exist. While I have had a complicated life that has in fact been very challenging, and certainly scary at times, I lack any coping mechanisms to deal with the challenges, and this ultimately makes every situation terrifying, whether my life is being legitimately threatened or I am just somewhat uncomfortable. The worst part of it all, though, is that my brain is well aware that I don’t have to be so scared, or that I don’t have to be so troubled by something like just a single image I really did only see for a few seconds. But my brain does it anyway, and I am dragged along for the ride. I can’t fully express how frustrating this process is.  One trigger is all it takes. Whether it’s a single word or an entire city…once I start to go down, I am forever falling.

My anxiety keeps me up at night thinking about if one of my health problems will kill me because they have gotten so close before, or if they will prevent me from starting my life before I ever get the chance. Anxiety brings me to tears constantly because I worry that I may never see the people I love again once I move to a new state this summer. It makes me compulsively check my neck and back for weeks by rubbing my hands over them, because of an image I saw of a creature with what I thought was disgusting skin. Anxiety prevented me from making music in college because I was stunned by the fear of disappointing my mentor as well as all the strangers in my class. All of these thoughts take place in my spirals of thinking. While I lay still in my bed, or quietly clean at my job, my mind is overwhelmingly loud. Like a concert during a thunderstorm, it all eventually gets so loud that all the sounds begin to blur together, and then it just all becomes white noise, and I am left exhausted.

The weirdest part of it all though, is that not always, but sometimes, all it takes to finally calm me down is a few comforting words from my best friend, mentor, or boyfriend, telling me that things are going to be okay. Or a really big hug. Those are good too. Once in a while, the giant monster named Anxiety is brought down to bunny sized by just a few drops of love. He’s still around, but not so ugly. Not everyone understands that, unfortunately. I often have people tell me, “I just told you everything is fine, why do you need to hear it again?” but really, I will always need to be reminded that life will be okay, and that I am cared for. Not because I forget it, but because just hearing it is like being given medicine. I need to often hear that I am safe, because I so often don’t feel I am. I suppose that’s tricky, so I don’t blame the people who don’t quite get it. But to the few people that do, and that are the ones that hit “Player Two Press Start” while I’m battling that big jerk, Anxiety, I am grateful to them beyond articulation. The power of being made to feel comfort and safety should not be underestimated, whether you are someone who helps a person with anxiety, or a person who has it themselves.

I’m sorry I have to say it, but you look like you’re sad

Your smile is gone, I’ve noticed it bad

The cure is, if you let in just a little more love,

I promise you this, a little’s enough.

Angels and Airwaves, A Little’s Enough