Eleanore Vs. Nobody Cares

Dearest readers,

My life recently has been intense to say the least, but now it’s settling down and I am relieved. The past week I have been even more full of anxiety than usual topped off with sheer panic about anything and everything. I have felt lonely despite being surrounded by incredibly loving people, my depression creeping up on me like the wicked Dementor that it has become. Though several of the stressors have now subsided, my panic is still here and as always, my anxiety disorder isn’t going anywhere. I think I need a million hugs.

Thankfully, I spent a mostly calm weekend with my boyfriend. I was laying in bed, waiting for him to shower as I  scrolled along Facebook when I came across a link that had to do with anxiety and relationships. It seemed right up my alley, so naturally, I clicked it. Within the article was a quote that instantly brought me to tears, for the truth of it stung at my heart. I can’t find the exact quote or article, but I still have that first sentence fresh in my mind:

People who have anxiety disorder are convinced that at some point, everyone will leave.

I was stunned by how one sentence could relate so much to one of the darkest parts of my mind that I often try to stifle.  To add to it, John Green, an author who suffers from Obsessive Compulsive Disorder, said that when it comes to mental disorders such as mine and his, you must come to the realization that your brain lies to you constantly; and he could not be more right.

My anxiety and depression cause my brain to lie to me incessantly. Whether they are telling me I’m physically unattractive or screaming that I am not good enough for anything or anyone, they never quiet. They force me to rethink and constantly doubt, always feeling unsure about myself. When I commit to any outward expression of myself, my mental disorders instantly reply, “nobody fucking cares. Why are you even trying?”

Most recent I have noticed this with social media. I am painstakingly cautious about what I write and post, and even still, I have to look at each picture or read each post a dozen times over to be sure I want it to be seen. I regret nearly everything I do and constantly question every single word I post, wondering if it is important enough or clever enough to be read by others without wasting their time. At least a few times a day, I will write a post or a blog and then quickly delete it, because my brain convinces me that nobody cares.

Having an anxiety disorder makes it so that trusting anything is a difficult feat to accomplish; but the fact that many times I am afraid I can’t even trust myself makes everything far more difficult. The worst part of all is that I am fully aware that my brain is doing things wrong and isn’t working properly, but I cannot seem to stop it.

A while ago I was talking to my counselor about all this, and she suggested that anxiety disorder is much like a Chinese finger trap. The more you pull, the more tension you create. Since I’ve lived nearly 27 years with the illness, I’ve come to realize that she is incredibly accurate in her statement. In the words of the Borg, “resistance is futile.” Who knew they all had Generalized Anxiety Disorder?

If that is the case, I am left in a conundrum, because a mental disorder has a firm grip on my brain, but any attempts to fight it only makes the grip tighter. It seems the third option, and only way to actually get better, is to teach myself to turn the mental tables on my mind. To begin to tell my disorder what it has always told me. While it may take years of practice to get it right, at some point, I may be able to have a thought, and let it pass rather than latching onto it and obsessing for days, letting it consume all my other thoughts making it impossible to think clearly.

I look forward to the day I am able to tell my disorders with confidence, after all it’s kicking and screaming, “you know what? Nobody cares.”

Dig down, dig down, dig down,
And find faith.
When you’re close to the edge,
With a gun to your head,
You must find a way.

~Dig Down – Muse ( I encourage everyone to watch this video featuring the gorgeous Lauren Masser, a disabled actress/model).

 

 

Eleanore VS. An Unedited Notice, Straight from her Heart

Dearest readers,

This post is going to be extremely different than my usual ones. Today I am on bed rest due to a Chronic Fatigue Syndrome relapse. As I lay in bed, hyper aware of the pain surging through me and the weakness weighing down my limbs, I can’t help but think about the oh so many people that are convinced that CFS/ME is not a real disease.
 
I try so hard to be a positive person, and most days I succeed. But days such as these are a struggle in every way, and to struggle physically and mentally while constantly being reminded that many people think I’m faking it is a little more than I can take at the moment. Even typing this out is painful, yet I feared if I didn’t I would simply burst from it overtaking my mind.
 
I don’t understand why would people think I want to pretend to be the way I am. I’m baffled that they do not realize  I spend so much time wishing myself into oblivion, wishing my life was different. Why do they think I’d rather stay in bed then work, or have fun, or deal with the billions of things I have to take care of? I’d chose your 40 hour work week over my plethora of chronic illness faster than a single beat of my heart. But I’d doubt you’d want to trade.
 
Often I dream of a magic serum I could invent, where I could inject someone with my illnesses so that for just one day, they would truly understand what it is like to be chronically ill. Not to cause them equal pain, but to open their eyes and obliterate their ignorance. I just want to be believed in and supported.  Is it really too much to ask to stop being called a drama queen, a victimizer and a liar while battling my health? 
 
I’m so tired of having to prove my sickness. Chronic illness isn’t all of who I am; but it is a part of my life that should be acknowledged and believed in. I want to be loved for who I am as a whole, not only what I can or can not do. I’m utterly exhausted of trying to prove myself in every single way, whether it is to prove I can overcome my sicknesses some days, or to prove that I have them at all. Either way, I am doubted. 
Please. Listen. Please.

Eleanore the Angry Celiac Vs. Everything

Dearest Silly Yaks (and regular yaks, too),

Over ten years ago I was diagnosed with Celiac disease and my life, much like my diet, was flipped upside down. There was thankfully no Demogorgon in my Upside Down, though it often felt like one was living in my abdomen.  Since I started my blog, I have become fairly transparent about most of my health issues and diagnoses; but the one I have been oddly removed from has always been Celiac Disease. This isn’t for a lack of wanting to express my thoughts on living with the disease. On the contrary, I have been purposely biting my tongue about the disease that I suffer from because of the stigma that comes along with the way of life I am forced to live due to the illness. Finally, I have decided to release my tongue from the clutches of my misaligned teeth. This decision was largely brought on by an unexpected muse; my phone.

While I am unsure how it became activated, my phone has an app that constantly sends me little notifications. On occasion it can be useful because it tells me what the weather will be, what new albums have come out, and even tells me when the St. Louis Blues are kickin’ ass. For the most part, it is a handy little addition to my robot friend. However, it also finds articles it thinks are relevant to my life. Nearly every day, at least one of these articles has a title that reads, “Irish People are Wasting Money on Gluten Free Food!” or, “The Truth About Gluten Free Diets!” and my favorite ones, “Gluten Free Diets are Actually Dangerous!”

Yes, I agree that gluten free diets are a fad…to an extent. It is true that those who are not Celiacs or allergic to wheat should not be eating gluten free because it can have adverse health effects. Nevertheless, it must be said I am one thousand percent fed up with the fact that the media has been focusing on the fad while Celiac disease as a whole is left completely in the dark. I am exasperated by the fact that the gluten free fad gets more attention than the disease that has caused so  much struggle and suffering in both my life and millions of others.

While I cannot speak for every Celiac, I am sure most of us would agree that we are sick of the dirty looks, rolling eyes, scoffs and skepticism we receive throughout our daily lives. We are exhausted of the scathing questions laced with doubt aimed at us because of how our disease alters our diets.  Lately, I have realized that one of the reasons I am especially aggravated by the never ending slew of articles and videos about gluten free diets is that while diet is a tremendous part of a Celiac’s life, these ignore everything else that entails being a Celiac. It ignores the depression, the brain fog, the weakened bones, the nerve and muscle issues, the exhaustion, the hospitalizations, and the countless other attributes of the disease.

Every time I see one of these articles pop up, I feel shamed for an illness I had no choice in having. Furthermore, I feel completely ignored, my serious illness being constantly ridiculed by major media. It seems the entire world is making a mockery of my disease. As I have said before, no one in their right mind would doubt or make fun of someone with diabetes even though they must adhere to a strict diet. Why must it be any different for us?

I have tried so many times to write a post like this, and each time have ultimately decided not to post it. I would think to myself that I didn’t want to come off as angry or crude, or dip my foot into the never ending clusterfuck that seems to be the conversation about gluten free eating. After too many years, I have been sent over the edge.  Our society is focusing on the wrong part of gluten free eating, and those such as myself suffer for it. 

Of course, people should think logically about their own specific health before following a diet of any kind. But this fad should not be the only focus. The primary focus should  be aimed towards how to be supportive of Celiacs, and most importantly of all, empowering someone diagnosed with Celiac disease to make a healthy transition to their new lifestyle that can end up truly saving their life.

Instead of all the doubting and intent on proving us wrong, why don’t we spread more help and information that will better the lives of those who are chronically ill with a serious disease? Not to mention, most people I have met that are non-celiac gluten free could literally care less about those who say it doesn’t make them any healthier. They will do whatever they want, as they should, and will figure out what is best for them in the long run. Regardless of the fad, I am sure that the repercussions of a normal person eating gluten free are not nearly as terrible as a Celiac eating normally or not having enough information.

I’m sure this one, angry little post won’t change much, though if it opens the mind of even one reader, I’d consider it a success. Celiac disease is a real illness and a dangerous one, and it is time that we turn the spotlight on what truly matters – helping those who are ill get better in a healthy way, and not shaming them in the process.

I think garlic bread would have to be my favorite all-time food. I could eat it for every meal. Or just constantly, without stopping.

~Scott Pilgrim (I’m sure he meant gluten free bread…right?)

 

 

Eleanore Vs. A Battle With a Calendar

Dearest human thingies,

I have a profusion of hopes for my life; even on my most unwell days, I still hold a light inside me. Some days it is just the flicker of a struggling candle, while other days it is a beacon of light that encourages me to move forward.  Either way, it is always there, whether it is whispering or shouting. One of my biggest goals of all is to become a true writer. As I’m sure you are aware, that’s not a quick or simple goal to accomplish. I’ve found some great guidance here and there ,especially from WordPress University; a guide I didn’t even know existed until I accidentally stumbled upon it. It was like finding out Jackalopes truly were real (I still have my hopes up for that one. Don’t judge me, internet).

One piece of advice I have come across in regards to motivation and time usage is to create an editorial calendar. You know, a calendar of what I write on what day to keep me on a steady pace towards my dream. I thought this was a novel idea, so I printed out a pretty little calendar with a donut design (I’m an adult, I swear!) and was thrilled to create my plan. Later that day, before I could work on it,  I became exhausted, my body hurting and aching while my mind fell into a haze, and I resigned myself to my bed after a day of running around and helping my adoptive mother with all the things.

This has lead me to a conundrum that I feel has been an impediment in my life for as long as I can remember. It is extremely hard to stick to a schedule of any kind when my life is ruled by my health. Even planning what to do in a single day sometimes doesn’t work because I think I had more energy than I truly do, and I’m left frustrated and unproductive.

I would love to write out an editorial calendar fro the next three months, and I do think it would help immensely. But how does a schedule work when I must constantly rearrange it last minute because of my health on any given day? This is a large part of what I have such a hard time finding any steady work. I am an incredibly hard worker and I am extremely motivated; however, regardless of how motivated I am, if I am in too much pain or too unwell, that takes priority, and nothing else matters.

Of course some would say, “just work through it!” or “just take more pain meds!” But they don’t understand that I already am working through my physical and mental pain every single second of every single day. Some days it is  just too much. Some days the pain in my body is too severe for me to move around my home, or my chronic migraines are too severe for me to think through. I have better and worse days, but the pain is always there, and I do indeed work through it. But even for someone like me who has become accustomed to the feeling of chronic pain, there is a limit. There’s only so much one person can take, yet almost daily I cross that line because after all, I still need money to survive.

No matter how much we hate it or refuse to admit it, for those of us with chronic illness, our health comes first. Even when we try everything in our ability to control or ignore it, even though we sometimes win, we nearly always end up paying for it later. Of course, this doesn’t mean we can never do anything. I simply refuse to let my illness take over my entire life. If anything, I have to maintain the belief that there must be a balance.

For people such as myself, there must be a way for us to be able to plan, organize and work while still remaining flexible enough to care for ourselves as we need. For each of us, this means something different depending on what exactly we suffer from and what we need in regards to our care. No one chronically ill person is like another, even if we have the same illnesses, but I’m sure many others share this same conflict.

My hope is that despite my ongoing frustration and struggle, the realization that I am in need of a particular way of weaving work into the rest of my life will only motivate me to create one that is both healthy and productive so that I’ll be able to succeed in the way that is most fitting to my situation. I may not have started out with a very good life; but I am a stubborn little asshole who is determined to create one without causing a great deal of harm to my well being. There are many people that do sacrifice their health in order to work, and I know how hard that is as I have done it myself. In reality, no matter how sick a person is, they still need to make money in order to survive. I’ve been in that situation most of my life, and I currently still am. But I am so painfully unhappy with the way things are, and more than motivated to change it. I’m not sure exactly how just yet, but I’m working on it. And dammit, I will figure out how to plan my editorial calendar!

Here’s to my future, and all of yours.

If you are a fellow writer who is slowly yet surely building your blog, check out the free WordPress Uni. I love it, and it is wonderfully insightful! Click here to be magically transported! Woooooooaaahhhh!!!

Let’s make this happen, girl,
We’re gonna show the world that something
Good can work, and it can work for you
And you know that it will.

Let’s get this started, girl,
We’re movin’ up, we’re movin’ up
It’s been a lot to change, but you
Will always get what you want.

~Something Good Can Work – Two Door Cinema Club 

 Eleanore Vs. Abby Normal

Dearest blossoming humans,

I am well aware that it is against protocol to write part one of a post and then go on to write something unrelated before writing the other half. What can I say; I’m a rebel. Ironically, this post is about the concept of normal and what it means to a chronically ill person, so if there ever were a time for me to not follow an unwritten rule, it’s now.

Yesterday afternoon I was driving from work to a doctor’s appointment. I was in an exhausted haze and in a great deal of pain, but still my mind was overthinking as the thunder grumbled in the distance and the rain flung itself against my car. As I joined my fellow drivers on the freeway, I looked about, wondering where everyone else was headed.  This brought me to the thought, “What the actual fuck does it mean to be normal?”

I’ve never been what would be considered “normal,” which means I’ve heard the word a great deal in my life, especially in the way of judgment. “Why can’t you just be normal?” I’d be asked, by all sorts of people. On my worst days, I would pray before bed that I would do anything in the world if I could just wake up and be normal. I wanted to look normal, act normally, speak normally, and most importantly of all,  have normal, standard health and be rid of my chronic pain and health issues.

Nowadays, each day is a battle not only with my health, but to fight against my impulse to  wish myself into oblivion as I have for so long.  On days where it seems I can’t even do the simplest things right, or the days every single joint and muscle in my body are inflamed, I still have that thought. However, here is my confession: I have no idea what “normal” means. So what exactly have I been wishing for?

Okay, let me rephrase that. I know what normal means, mostly, though more often than not when people are critical of my abnormalities, they’re comparing me to someone else as an example of how I should be. I wanted to know the exact, non-bias definition of the word, so I posed this question to the Google. The Google was happy to answer me, and within a click of my finger and a blink of an eye, it brought me my answer:

Normal: Adj. Conforming to a standard. Usual, typical, or expected.

Well, that definition certainly explains it well…sort of. It doesn’t help as much as I hoped. It says conforming to a standard, but whose standard? Usual and typical of what exactly? The more I dissect this, the less helpful it is. Sometimes our language can be vague and confusing, and for an overthinking human such as myself, it is incredibly aggravating. For the sake of my post, let’s just assume the standard is the standard of American society (since I live in America) and what is expected of an average 26 year old. Spoiler alert: I am not an average 26 year old. 

As I grow older I  begin to gain more understanding about what it truly means to be myself and live my life, illnesses, abnormalities and all. I have tried to deviate from self loathing and wishing myself away, instead moving towards acceptance. Sometimes it works. Even still, there are some days it really doesn’t work, and I am left feeling defeated for the millionth time. When you’re chronically ill, defeat is something you’re force to get used to.

There is also the issue of those outside of my brain (as in, you know, literally everyone) who take my acceptance of my abnormalities and difference as self hate, self pity or simply giving up. On the contrary, I’ve begun to learn that accepting that I will never be normal is one of the most freeing gifts I could ever possibly give myself. It is only with acceptance of what I cannot do, and what I am not, that I can discover what I am capable of. It is only after I realize that the “standard” road is not for me that I can learn to pave my own that will still lead to happiness, despite it being more difficult to walk along. Not to mention that my concept of happiness will also be different than many others. Some days, I am not even walking, but crawling down my road; yet it’s better to crawl along the right road than to be stagnant on the wrong one.

It isn’t typical to be in as much physical pain as I am every day, to need so much medical help at such a young age, or to have as much trauma, anxiety or depression as I do. But this is my life, the only one I have been given, and as I have said before and will continue to say a thousand times more, I still believe it can be beautiful and thriving; I just may not get to that point as easily or in the same way as many others. What will help me is not to force myself to be normal, but to embrace the fact that I’ll never be, and to make goodness of that instead.

For all my friends who are unwell, atypical in any and all ways, or who didn’t get a say in their unique and difficult circumstance, know that though we may have to work a thousand times harder for every single part of our lives, and even though many days we might lose our never ending battle, we can still get to where we want to go. We have to be stronger and more patient than most. We may not be normal, but we are so much more than that – we are resilient warriors of suffering, and that is never to be dismissed by ourselves or others.

Sing it out, boy, they’re gonna sell what tomorrow means.
Sing it out,  girl, before they kill what tomorrow brings.
You’ve got to make a choice,
If the music drowns you out;
And raise your voice,
Every single time they try and shut your mouth.

~ Sing – My Chemical Romance

Eleanore Vs. Trust (Part One)

Dearest readers,

There has been so much on my mind and heart lately but very little has been able to come out. I believe part of this is from exhaustion, part from my anxiety being intolerable for reasons yet to be described, and part may just be true Writer’s Block. Regardless, I am growing tired of this war between my brain and I. Thankfully, it seems today I can finally compose something in full.

Yesterday, as I drove a whole four minutes to visit my darling friend Amanda, I thought about something she said yesterday about trusting doctors and knowing who really has the best in mind for her. I know this feeling well; as someone chronically ill, I am constantly having to explain to doctors how my illnesses work together since having as many as I do all at once (especially at my age) isn’t exactly standard. I am thankful for the doctors I have had who were compassionate towards me and tried to assist me as best they could. However, now and then I have also experienced the opposite, and many times I experience something in the middle of two extremes.

One of the first blogs I published when I started Sickly Stardust was a two part post about my battle with my facial maloclussion. To reiterate, a facial maloclussion is a genetic defect that caused my face to become malformed. It effects the shape and function of my jaw, my teeth, my speech, my ability to breathe and eat, and causes chronic pain in the shoulders, neck, jaw, and skull.  I was born with the condition and have struggled with since (You can read the two posts by clicking the links at the bottom).

When I was 24 I went to the University of San Francisco to meet with an orthognathic surgeon because I had been rejected by at least six other orthodontists who didn’t quite know what to do with my rare condition. After speaking to a knowledgable and kind doctor, he had my case reviewed by a panel of experts. Since it was a complex and strange case, he thought presenting it to the panel would be the best way to decide a course of action.

In the end, They decided that I would not benefit from the extensive orthognathic surgery because they were concerned it would actually increase my pain rather than make me healthier. They were also unsure if my bones could take the breaking and manipulation needed to complete the process because my bones have been weakened by my Celiac Disease. Ultimately, they told me to come to terms with the fact that the only fix to my maloclussion was something that my body couldn’t handle, and that I would benefit most from finding a pain management therapist to learn to live with my condition.

Fast forward to a few months ago when I had one of my episodes in which my jaw and teeth go into turbo-nightmare mode and cause me great suffering. My entire right side of my face felt swollen and was riddled with pain. It somehow felt that my right side of my face had been twisted. I was in complete agony and scared because this episode was far worse than any I had prior.

I went through several dentists until I found one truly spectacular one willing to help me. She did an extensive check up and talked to me at length about my maloclussion. For the most part I was in good shape, though she did see a small dark spot in my jaw which she suspected may be a weak spot in my jaw bone. I thought, “a weak spot already? I’m only 26. This just isn’t fair…I suppose the UCSF doctors were right.”

This lovely dentist ended up sending me to an orthognathic surgeon here in St. Louis, who, after pondering over my X-rays, told me that I absolutely did need to have the surgery done because I was only going to get worse with age. I told him about the decision made by the panel at UCSF, but he disagreed and said there was absolutely nothing to worry about. He then gave me the number of an orthodontist he was certain would take me while on MedicAid, and sent me on my way.

After the appointment I felt wildly conflicted. Part of me was terrified to have the surgery while the other part of me was ecstatic at the prospect of having one of my many illnesses cured. It would have a significantly positive impact on my body and my life, and if it reduced my pain long term, there was no reason for me to not have it if I could afford it. Still, the idea of having my jaw purposely broken was frightening.

As per the surgeon’s orders, I called the orthodontist as soon as I returned home. I explained to them the situation and asked for an appointment, to which they instantly replied, “we don’t take adults on Medicaid.” The woman quickly hung up on me. My anxiety surging and tears flooding my eyes, I called him right back, and he said to try another place. I immediately did, only to be told that Medicaid does not assist with orthodontics for adults, no matter the case. I hung up and cried for hours.

For a second, I had my hopes up that I had a fighting chance. I felt a light, thinking there was something to be done about one of the worst parts of my health. Just as quickly as it was given to me, it was instantly taken. I started to think about who was right; the surgeon here or the doctors at UCSF. What if they were correct in saying that my body couldn’t withstand the surgery? Maybe that spot of weakness in my jaw was proof. What if the surgeon here was wrong, and didn’t see the whole picture? Who am I supposed to trust with not only my body, but the entire look and function of my face and jaw? And, what’s more, if I can have the treatment, will I ever be able to afford it?

To be continued…

It feels like I only go backwards, baby,
Every part of me says go ahead.
I got my hopes up again, oh no, not again,
Feels like we only go backwards, darling.

Tame Impala – Feels Like We Only Go Backwards

To read more about my facial maloclussion, click here for Part One and here for Part Two! 

Eleanore Vs. Wandering Thoughts in Wichita

Dearest readers,

I have gone on an unintended two week hiatus from my blog. I have found that in general my life is always better when I’m writing regularly, and since I have not been able to do so I have felt a piece of myself missing. The reason for my absence was largely due to the fact that right as I was starting to find my groove in life, working towards each of my most paramount goals, I was suddenly floored by several bouts of sickness that made doing much of anything exceedingly difficult.

First it was strep throat followed by severe GERD. After wrestling with different medications and adjusting my eating habits even more so, I was able to get my GERD mostly under control. I thought that I was going to be able to resume my hard work until I came down with an Upper Respiratory Infection, and for all my stubbornness I finally had to stop absolutely everything and rest. I became so weak I could hardly walk and struggled to breathe with the weight in my chest from the infection, and ultimately had to call upon a dear friend as well as my boyfriend to assist me in the Emergency Room. Despite it all, I am happy to say that I am now in Wichita, Kansas for the week, able to breathe and enjoying a much needed rest from the insanity that has been my life.

Through all this temporary sickness piling atop my chronic illnesses that I battle each day, I started to think, “I am so tired of dealing with illness and being sick. I don’t want to think about it anymore or have anything to do with it.” This thought was awfully distressing considering I have devoted myself to this blog which is mostly about living with chronic illness at a young age. This brought me to an inner conflict that started to break me.

A few weeks ago I had one of my many existential crises and I flew into a mental frenzy. I wondered if it was healthy for me to focus so much on my chronic illnesses and write about it as I had desired to for so long, and if this was really what I was meant to do. My goal had always been to write in order to help both myself and others like me, but I wondered if that was what I was really accomplishing. If writing was not what I was meant to do, have I wasted the past two years on something that would amount to absolutely nothing? I felt like I had no direction, the future I had seen myself so clearly in now turning into a jumbled, blurry mess.

I ended up calling my friend Brian to talk to him about it, explaining what triggered my crisis and where it had lead me. I told him that I wanted so badly to make something beautiful out of all the suffering I have endured throughout my life, but I also needed to survive, and maybe finding a “normal” job was the best option since I nowhere near surviving right now. I explained how exhausted of suffering and how the peaceful, more composed life I dream of always seem to fall short of my hands. After my explanation, he repeated to me one of his catch phrases that he has told to me a thousand times before. “I think you are doing the right thing,” he said firmly, “but the right thing to do is sometimes the hardest.”

Here I sit in a new friend’s lovely home in Kansas. His home is lovely and comfortable and filled with things he and his fiancee love, included their sweet dog Thunder. I am thankful for the opportunity to visit a new place, but every time I meet someone my age who seems to have their life together, I can’t help but think, “this is all I’ve ever wanted, won’t it happen for me too?”

Some people in life are extremely lucky. They grow up healthy in loving families,  go to college, find stable jobs, and the rest of life continues on. Others are less fortunate and consistently fight through life. I haven’t the slightest idea what makes the difference, or how one life can end up so unlike another. In my writing I reaffirm that those of us who suffer from abuse, chronic illness, or a lack of stability in the most important parts of  life a battle are never less deserving of happy. We can still have fantastic lives, however it does take more time, energy, and resilience to get to that same point others seem to come to so easily. For all my desire and jealousy, I easily forget that I too am on my way. I may not have very much money or even a home, but nevertheless, I am on my way.

There is a painfully cliche proverb used in times such of these, and if you know me at all, you know that I have no tolerance for finding them in most writing, especially my own. Yet every now and then, I come to a point in my life where I think, “damn. Confucius was onto something,” and I have no choice but to use one of them. So here it goes:

It does not matter how slowly you go as long as you do not stop.

I hope to get back into the regular swing of my life once I return from vacation, and most of that includes working towards the future I yearn for. For now, I hope to enjoy my short visit here with my boyfriend, good friends, and the lovely warm weather.

This is gospel for the fallen ones,
Locked away in permanent slumber.
Assembling their philosophies,
From pieces of broken memories.

Their gnashing teeth and criminal tongues conspire against the odds;
But they haven’t seen the best of us yet.

~This is Gospel – Panic! At the Disco (Piano version because I love it) 

 

Eleanore Vs.Rebellion Nose!

Dearest readers,

Yesterday I went to get my monthly haircut and promptly took a selfie because I felt shiny as fuck. I also wanted to take a picture of my hair looking nice before the severe storm came and had the chance to ruin it. I think I look pretty okay (and not too sick) in the photo; my hairdresser did a truly fabulous job with my hair, but a tiny spot in the photo caught my eye . That little red bump on my nose that looks like a pimple but is actually not; it is a permanent scar from one of my many failures.

When I was 20 years old I began to slowly come in to myself and decided that I wanted to start on what I had hoped would be a journey of getting lots of tattoos and piercings. I decided to start with my nose (because it already stands out so much it may as well be embellished). My friend had it done a year prior and had no problems, so I thought that it would be just as easy for me.  A quick shot, a little blood, and I’d be on my way.

Of course, because I am me, I had no such luck. I went to the mall to a shady little kiosk run by a woman with a solemn face that expressed she had no interest in anything including piercings. She drew a black spot on my nose, then told me bluntly, “don’t. move.” Those were the only words she spoke to me. She then shot my nose with the piercing gun, and naturally I flinched because it was loud and…well…piercing. (I’m a writer, I swear!) “You moved!” she scolded. She pierced me again, and again… And then I passed out.

Though I was unconscious I am sure I fell from the raised chair onto the tile mall floor. I woke up in a sweaty, nauseated daze to the woman and a security guard look down upon me. The guard was noticeably worried while the woman still had yet to express a single emotion. As always, my Vasovagal Syncope was triggered and I ended up being carted off in an ambulance. This was also before I knew I had the disorder at all.

At the time I was living with two family members who were also the ones who were the most abusive and dysfunctional. I did not tell them I was going to get my piercing because I knew they would have prevented me from doing it after demeaning me relentlessly. Of course, I ended up having to tell them since I had to be fetched from the hospital.

When I arrived home it was just as I predicted; I was screamed at, scolded, made fun of, and humiliated thoroughly. I was still feeling sick from my episode and was feeling worse by the moment. I had fallen to the floor unconscious in front of a number of strangers and yet somehow they thought I needed to be made to feel worse. I went to my room, barricaded the door (as I often did because it is a trick you learn living in an abusive home) and cried for several hours. I felt frustration, guilt, shame and hatred for my entire life. Dramatic, I know.

This experience was only one example of many instances where I tried to do something seemingly normal for my age and it turned out terribly wrong because I am just not like everyone else. My chronic illnesses love to remind me that I am unique, to say the least. Now, seven years later, I still find myself often focusing on all that I can not do. it’s depressing and exhausting to realize multiple times per day that things others don’t even have to think for a second about are difficult or impossible for me for one reason or another. Whether it is taking a bath, lifting something, eating regular food, dying my hair or any of the other numerous things I either  cannot do or have to work extra hard to do, I never get used to my can nots.

It is incredibly easily when dealing with chronic illness to be sucked into the world of can nots. It happens to me pretty much on a daily basis, and it does me absolutely no good. It does not help my anxiety, my depression or my physical illnesses. Especially in my worst bouts of depressions, my inabilities seem to overtake me completely; and they leave me feeling positively depleted.

I did not have a healthy childhood or a healthy teenage life. I was also not a healthy young adult and I am not a normal adulty adult now. Through each stage of my life, there were parts of life that people of my current age should be able to experience, even if it gets them into a little bit of trouble. My entire life, I was too sick to be edgy, rebellious, or mischievous. Though I still had a few late nights and I did sometimes lie about where I was, I always paid for it, not because I was caught but because my health would constantly betray me.

BUT THEN.

I remember that I rebelled at a very early age against my abusive family and refused to either be like them or be permanently damaged by them. I recall every illness I’ve had to fight off and every hospital stay I’ve  had to get through without proper support. For every bully and abuser I have had, I eventually ripped  myself away from them in hopes that I would find a healthier life, even if I had to fight extremely hard for it. I’ve fought against depression and anxiety for years, and every day I am alive is a day I have won, even if I can barely get out of bed because of it. I am constantly rebelling against that which does not positively serve me.

If there is one thing Star Wars has taught us, it’s that badass rebels come in all forms. Some are tattooed and pierced, others in sensible sweaters or suits. Some are space cowboys while others are alien princesses. Some with hidden illnesses while others are in wheelchairs. Most are a combination of all sorts of aspects that make up who they are on the inside and outside. Regardless of what we can’t do or what we look like (or don’t look like, in my case) what we can do is so much more important. It can be difficult to remind ourselves of that, but no matter our restrictions, our capabilities still matter. They matter so much, and they can still be invaluable to both our lives and other’s. We can all be rebel fighters of our own lives.

I’ll be there for you, Jyn. Cassian said I had to.

~K2 the sassy robot

Eleanore Vs. A Movie Theater Floor

Dearest Junior Mints (and Senior Mints, I am against ageism),

I generally dislike weekdays (as 90% of humans probably agree), and last week was far from an exception. Between battling my anxiety,being devoured by depression, and still having to get regular life things done, I was depleted by Friday. Thankfully, the weekend, as always, was my savior. I was happy to see one of my dearest friends, Holly, and catch up over tea and coffee. Afterwards I set off to spend the rest of the night with my boyfriend and have a calm, easy night since we were both tired. Plot twist: that did not happen.

We decided to see John Wick, also known as Keanu Reeves kicking all kinds of ass. We made our way to the theater just the movie started. I never saw the first John Wick, but I soon learned that a lot of people needed to die because of a car and a puppy, and that I was completely okay with that.

Halfway through the movie I began to feel ill. I suddenly became severely nauseated and overheated, which nearly always means that I am going to have a Vasovagal Syncope episode. For some reason I was hoping that the thing that always happens given these symptoms would somehow not, so I left the theater without telling my boyfriend and scrambled to the bathroom. I hoped and prayed that it was a false alarm and that I’d simply return to the movie and everything would be A-Okay.

Things ended up being super not okay; I did not make it to the bathroom and quickly realized It was indeed Vasovagal Syncope trying to drag me to hell. I fell onto the ground (thankfully pulling my jacket to the floor before falling so my germophobia would at least be somewhat quelled) and started to lose my vision as I wretched like the exorcist girl, dry heaving and moaning. Sexy, right? I yelled for someone to help me and soon staff members began to surround me, asking what I needed. I assured them that this was actually somewhat normal for me, and that I didn’t need an ambulance, but I did need water, ice and something to vomit in; the dudes abided.

Many times these episodes occur in the middle of the night and I am alone, or the person I needed was already there (though not always helpful). Since my relationship is still very new, I forgot for a moment that I should probably tell my boyfriend that I was on the floor outside the theater. I tried to call him, but it didn’t work, because he is a normal human being who puts his phone on silent when in a theater. I asked a staff member to fetch him for me, which now that I think about it was probably far more scary for him than it would have been for me to tell him that I was unwell in the first place before I ran off. Oops (Sorry, boyfriend).

He was noticeably worried when he came out and promptly sat on the floor and grabbed my hand. I was not only fretting about my current physical state, but about my relationship as well, and my anxieties about it were not making me feel any better. There was only one other instance I had this exact same situation happen in a movie theater with a friend. After my illness allowed to make my way out of the theater I was taken home, and he never spoke to me again. I was terrified the exact same thing would happen which worried me because although it might seem odd, I really fucking like my boyfriend.

Contrary to my worst fears, he was incredibly compassionate and calm the entire time, and ended up handling the ordeal better than I could have hoped. I convinced everyone for the third time that I would be okay after laying on the floor a while, and they left us to wait it out. Of course, laying on the floor isn’t quite what you’re supposed to do in a movie theater, so we looked just a teensy bit out of place. People walked by staring, some asking if we were okay, to which we always replied that we had already received help and that we were thankful for the concern. After a few times my boyfriend said, “The next time someone asks I am going to tell them we’re on a picnic.” I told him that he absolutely should do this, but I honestly didn’t think he would. Moments later a kind woman passed by and asked if I was alright, to which my boyfriend nonchalantly replied, “oh yeah, we’re fine, we’re on a picnic!” She looked at us with an awkward smile and walked away. Though I had all my energy drained from me because of the episode, was embarrassed, frustrated with my body, and still unbearably nauseated, I laughed wonderfully hard. He did too; and it made everything a bit less painful.  The people at the theater were all wonderfully helpful, and towards the end returned to give my boyfriend free movie tickets since we never got to see the end of John Wick. I hope the dog made it.

Back at our rebel base I was given soup and gatorade while I tried to recover. I tried so hard not to, but I couldn’t help but feel guilty. All my life it had been constantly drilled into my brain that my illnesses, especially when they cause a bit of unexpected drama, are entirely my fault. I carry a heavy heart every day thinking that if I did this or that just right, maybe these things wouldn’t happen to me. I began to tear up as my boyfriend hugged me,  reassuring me over and over that it really wasn’t my fault. I was starting to almost believe him.

If anything, the one bright side is that the kindness from the movie theater staff and from my boyfriend really helped make a miserable episode infinitely better. Compassion and empathy can make many some situations, no matter how dreadful, far more tolerable. Their kindness didn’t make me any less nauseated or raise my blood pressure to a safer level, but it was one of the few times that I truly felt like I was not blamed for ruining someone’s night or made to feel like a freak. I was made to feel like a regular girl who is a little different, but still important and cared for. This whole experience made me think that maybe I can still have an amazing life even if my road is just a bit bumpier than most others. Maybe it doesn’t have to be my fault or anyone else’s when these things happen, and I can learn to accept even the most frustrating parts of the life I’ve been given.

I think, given enough support and kindness, that can absolutely happen. I’m well on my way.

Teller: Does the dog have a name?

John: No.

~John Wick – Chapter Two 

Eleanore Vs. Being My Illness

Dear stardust clumps,

Lately I have been stuck thinking about the origin story of Sickly Stardust. Not only my blog alone, but my entire life as a chronically ill person. Momma Rose asked me recently if I remembered when exactly I became ill. I explained to her that while I had been sick since birth, there were many events that unexpectedly threw me into the Upside Down, the worst being when I turned 18.

Right as I was deemed legal I was also deemed a Celiac. I hadn’t known it but the disease was tearing apart my body; I was severely anemic and malnourished, going into anaphylactic shock every three months, fighting to stay awake. When I look back, I was really fighting to do pretty much anything. There are many frustrating parts to getting diagnosed with a disease, the worst of course is actually having a disease. But there are other parts I wasn’t told about when going through a diagnosis. One of the aspects I struggled with the most was telling my friends that I was no longer an average teenager, but had suddenly been forced by my own body to figure out a new way to live.

I was conflicted about who to tell about my diagnosis and how I should go about it. I wondered if any of my friends would truly care, or if they would think, “why is she telling me this?” I considered the fact that since they were all completely average teens, they would have absolutely no idea how to react to one of their friends now being chronically ill. I feared I’d become a social outcast because I could no longer eat  at restaurants, and I at the time couldn’t even fathom sitting with people eating everything that was now dangerous to me. I also worried that because of my lack of health and energy I would quickly fall behind everyone else my age. For a while, I did.

As time went on there was one particular phrase I was met with – “you aren’t your illness”. I came to understand that many times this phrase is used when others have nothing else to say about a difficult health situation. Admittedly I have even heard this phrase in advertisements and from medical workers, all of them hoping to be encouraging. I comprehend that they usually mean those of us who are chronically sick have more to us than sickness. I agree completely with that sentiment, however as I have spent my entire life being chronically ill, I cannot help but think, how could I possibly not be my illness?

I’ll be honest, there are certainly times I struggle to remind myself that my personality encompasses more than my medical history. But every day I wake up in pain, persistently nauseated and fatigued before my day has begun. The pain reminds me chronic illness is very appropriately named; it is chronic, indefinite, everlasting. My illness affects every part of my daily life, my likes an dislikes, and they absolutely affect my personality. Therefore it is impossible for me to truly believe that I am not my illness. I most certainly am my illness, and my illness is me.

Instead of trying to minimize, ignore, or run from it, I have decided to change the narrative entirely. I am my illnesses, and they are me, and you know what? That is completely okay.

A few weeks ago I awoke in the middle of the night to one of my vasovagal episodes which can best be described as feeling like my brain is short circuiting. I started to shake and convulse, the nausea and intense sickness overpowering me. I called for my adoptive mother to bring me water and ice in hopes that I could prevent loss of consciousness. She came with the items I needed and I expected her to walk away and leave me to my misery as so many before her often did. Instead, she knelt beside my bed, held my hand, and helped me through it for the next hour until we were able to stop the shaking and I was able to be slightly confident that I would not pass out.

I don’t enjoy these episodes. In fact, I’ve explained on multiple occasions that they are one of the most dreadful parts of my chronic illness. I wish more than anything that I did not have to endure them for the last 16 years; however, for all my hoping it remains true that these episodes, as well as every aspect of my health, is a part of my life here to stay.

I am strongly against the romanticizing of disability, chronic illness and the suffering that entails being a person like me. However there is a distinction between romanticizing and wanting to change my view of a situation I had no choice but to live. If I can’t choose how healthy my body will be I can at least impact how I think about it.

There is a immense amount of fear, guilt and shame when it comes to chronic illness. Though I am a blunt and transparent person, especially in my blog, it never gets easier to explain to someone that my body doesn’t work as it should. No matter how many times I tell my stories I still fear being misunderstood, minimized, or worse; rejected entirely. I sometimes feel that I am not worthy of the time of others because I seem to be such a difficult anomaly. I worry that I’ll never be deserving the of happiness that everyone else around me seems to find with far more ease than I’ve ever known. I feel like I am too much work, even when I try to make life as simple as possible. I have been convinced by both my self deprecation and the abuse of others that ultimately I am little more than an inconvenience.

Well. Fuck all that. It is time to stop trying to convince myself that I’m not my illnesses . I am my illness, but look what I can do with them. Look how hard I fight, how much I try, how beautiful life can still be even with all that tries to hold me back. It is okay to accept chronic illness, to talk about it, to acknowledge it without awkward silences and bland cliches. I want to be myself, in my entirety.

I have spent the majority of my life wishing myself away, refusing to accept that this was the one life that I have been given for some unknown reasons that the universe never let me in on. Regardless of the reasons that I exist, I am officially  done with self loathing. Human life is not supposed to be convenient; it is supposed to be vibrant in its complexities, negative and positive.

Manic depression’s touching my soul.
I know what I want,
but I just don’t know how to go about getting it.

~Manic Depression- Moon Tooth (Hendrix Cover)