Widely Debated, Still Existing

Dearest readers,

Let’s start this one with a flashback: when I was 18 years old, fresh out of high school, I became violently ill very quickly. After never-ending hospital visits, I was told I had Celiac Disease … and was told little else. I went to dozens more doctors, many of which told me that Celiac disease was impossible for me to have for a slew of reasons, that it was “extremely rare,” and that the very existence of it was questioned.

It didn’t feel like the illness was up for debate – it felt like my existence had doctors in disbelief. I was told that it was more likely that I was a depressed hypochondriac, or that it was stress causing my ailments rather than a physical disease. I was directed to psychiatric help instead of physical medical help, and told over and over again that there was nothing to be done. Meanwhile, I refused to back down and continued to insist that something was seriously, physically wrong with me, and I needed help.

Now, nearly ten years later, things have gotten a great deal better with Celiac disease. More doctors are accepting that it is a true, physical disease, and that there is much to be done in terms of catching it early and treating it throughout a patient’s life.  Of course let’s not forget, the most delicious revolution in Celiac disease, all the food, recipes, and blogs that I could only dream of at the beginning of my diagnosis.

Despite the remainder of some stubborn doctors and ignorant people in the world who make fun of or deny that Celiac disease is a painful disease and not just a fad, life seems to be looking up for Celiacs, and I’m more than thrilled that my country has come a long way in understanding it (though we have an equally long way to go).

All of this is a good deal of why this month I have been left practically petrified (in the literal Harry Potter sense) when twice within this time I have been told by two different doctors that Chronic Fatigue Syndrome, another disease I have, is mostly a “stress thing,” that the medical community is not even sure if it really is a disease, and that it’s existence, and therefore my existence, is again, “widely debated.”

The second doctor especially left me positively enraged after telling me that my month-long Chronic Fatigue Relapses that inflame my nerves and fill my body with concrete were most likely panic attacks. I replied, “panic attacks don’t stay that severe for a month straight.” I explained I know this because I have mental health issues that cause them, and these episodes feel completely different. He agreed to this part, but had little else to say.

All of this has me experiencing a rough case of Deja Vu and I can’t stand it. When I was in the Emergency Room with a relapse a few months ago, the Emergency doctor completely understood that I was suffering from nerve inflammation due to my Chronic Fatigue Syndrome and had no doubt that it was more than just a stress reaction. Another doctor, ironically the same one who later gave up on me, explained to me that people with Chronic Fatigue Syndrome are bio-chemically different from people who don’t have the illness, and the disease is indeed a physical issue.

It’s confusing and frustrating as can be to constantly get mixed signals from the medical community. Sometimes I feel that I’m being told those with CFS are having a mass hallucination.  I understand that doctors do not know everything, and that autoimmune diseases especially are not well understood. I’m thankful to those committing to research to learn more about my diseases, but in the meantime, my only option shouldn’t dismissal by doctors, leaving me to my own devices to figure out how I’m supposed to live despite excruciating pain.

Let me be clear that there is no doubt in my mind that mental health certainly has an effect on Chronic Fatigue Syndrome, and that mental health issues as a whole are as real as health problems get. I have PTSD, Anxiety Disorder, and depression, so believe me when I say that I know how my body can suffer due to the symptoms of these mental health issues. However, with Chronic Fatigue Syndrome specifically, the more I live with the disease, the more I become convinced that mental health is only half of the explanation. Just as I believed with Celiac Disease, there is also a physical part, one that so far seems largely ignored.

I try to advocate for my own health as much as possible. I’m learning to do proper research on my own, to connect with others like me and to use food as medicine; and yet the fear remains that all of this is not enough. I’ve heard of people with Chronic Fatigue Syndrome ending up with organ issues or in so much pain that they lose their ability to walk almost completely.

Of course, there are clinics and doctors that specialize in these sorts of diseases, but I have very little money and only have Medicaid as healthcare, and you learn quickly that the word “Medicaid” causes people to hang up on you faster than the girl from the ring whispering “seven days” into the phone would.  So where am I left?

I wonder if in ten years, just like with Fibromyalgia, Celiac disease and other illnesses, if Chronic Fatigue Syndrome will go from “widely debated” to common medical sense. Again, none of these diseases are perfectly understood, and I still hear of people fighting doctors about them all the time, but it has gotten better.  I hope this is the case, after all, because I am already beyond exhausted of being continuously scrutinized and doubted, then left with little help.

My existence, my pain, my reality, is not up for debate.

Please Read This Fancy Thing!

Dearest friends and readers,

I have been missing in action for far too long due to a combination of  a Chronic Fatigue Syndrome relapse and a bout of Carpal Tunnel that together, made my hands less than operable and filled with fiery needles. This was difficult for me for all kinds of reasons, especially since I had been waiting to announce a special thing. I present to you now, that special thing:

Not that long ago, in a galaxy far away called Missouri, I decided that I wanted to take my site to the next level. I honestly didn’t think I could create something more, so I spent quite a few days glaring at my computer screen, wondering if staring at my blog for long enough would turn it into what I hoped for. Unfortunately, the glaring did not work; however after complaining to two friends about my frustration, they both kindly offered to help me. Thanks to my darling friends John and Bre, as well as the power of friendship, a star was born.

Okay, I’m being extremely dramatic; I’d apologize if I didn’t enjoy it so much. A star may not have been born, however, Sicklystardust.com was, and that is also pretty fantastic. I am so pleased to be able to finally announce this!-Bre and I spent much time and love on this site, and I’m quite proud of what it has become. 

Those of you who already follow me, I have migrated my followers, so you should still receive my posts and be redirected to my site (if it doesn’t work for some reason, please let me know! Small changes may still be needed!)

I created this blog to share my experiences so that others such as myself feel more understood and less alone. Though sometimes the topics I write about are complex and not always the happiest, I hope that love, understanding and compassion is ultimately spread through my writing; and of course, some laughs always help too, even in dark times.

For those who support me in all sorts of ways, thank you. You make it so much more pleasant for me to be, well, me.

Click here to be transported to the new site, and let me know what you think! 

 

Eleanore Vs. Sleeping Life Away

Dear sleepy things, awake things, and things that are somewhere in the middle,

I am currently sitting next to this sweet, sleepy little marshmallow, and he has caused me to think about my own relationship with sleep; so far, it has not been pleasant. I never remember a time in my life when I had a regular sleeping pattern. I have always slept far too much or too little, and no matter which it is, I never feel rested. Last year I was diagnosed with Myalgic Encephalomyelitis, more commonly (and ridiculously) known as Chronic Fatigue Syndrome. Though I was diagnosed with little explanation of what it meant to have this disease, upon my own research I found out that most sufferers of CFS/ME have the same problem. Sleep just doesn’t seem to like us.

In fact, one of the symptoms of CFS/ME is sleeping for as long as you like and still feeling as if you have barely slept at all. Considering I also have anxiety, depression, and a slew of other illnesses, sleep has never been my thing. This is unfortunate as I am a human, and need sleep for, you know, human reasons. This also means that I can only go so far before I inevitably run out of energy. To replenish my energy, I have to drop everything on my “to do” list and take a nap. Some days my naps are only 30 minutes, while other days they last hours, but no matter what one thing remains constant- I always wake up feeling guilty.

Most of my life I have been drowned by comments such as, “I wish I could stay in bed all day,” or, “I wish I could lay around and do nothing, but I have to go to work.” As I have said before, I would trade with that person in a second if it meant I would be healthy and able enough to work a steady, full time job. Each time I wake up from a nap, though I may have a tiny bit more energy, I feel dreary and heavy, my depression surging through me. I slowly check my phone, look at the time, and the same thought never fails to cross my mind – I fear like I am going to waste my life sleeping it away.

I’m often told how I don’t try hard enough or work as much as I should. Aside from this all being complete bullshit, I can’t help but think about my college days. At the time, I was taking a full course of classes, worked three jobs, and still had to do everything else to keep myself going. I was living in an abusive home, going to doctor appointments constantly, and was trying to survive through all my physical pain and business. There were nights I would be out from 7 a.m. to 8 p.m, then would come home to homework, cooking, and all the nastiness within my household. It was difficult to say the least.

To get through my days I would take any chance I could to sleep. I would sleep in my car in the parking lot of my college or I would take a nap at 10 p.m, wake up at midnight, and keep working until three in the morning until I finally got to sleep…before doing it all over the next day.  Throughout this period of my life I kept trying to convince myself what everyone else kept telling me; I wasn’t sick, I was just faking it. I could do all the normal things regular people do if I just tried hard enough. Turns out, I was extremely wrong, which doesn’t take a super genius to figure out.

You’d think being officially diagnosed with so many illnesses would be enough to convince me, but still I kept running. I fell into an even deeper depression, my anxiety was out of control, my physical pain was unbearable, and ultimately I ended up collapsing in the hallway due to sheer exhaustion. As I grew older and received more help for my mental and physical health, I finally accepted the lesson that life had been trying desperately to teach me, but that I had always ignored: I was not like everyone else, and I just had to stop pushing myself, or I would not survive.

As I grow I have learned that the only way I’ll ever be happy is if I come to terms with the fact that I operate differently than others. I need stop resisting my body and learn to move with it, rather than against it, and often that means resting when needed. I’m beginning to understand that when it comes to chronic illness, part of being well is having compassion towards yourself and towards the fact that though others may not be willing to understand you, you have the choice to understand and love yourself.

I encourage you, dear reader, as I encourage myself, to give yourself grace and compassion in every way you can.

I’ve become, a simple souvenir of someone’s kill.
Like the sea, I’m constantly changing from calm to ill.
Madness fills my heart and soul as if the
Great divide could swallow me whole, oh how I’m breaking down.

~Sleeping Sickness – City and Colour

 

Eleanore Vs. Privilege in Flux – Part Two

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Previously, on Sickly Stardust!

I fell from having exceptional medical care to nothing at all, and it was torturous. It opened my eyes to the fact that though it was frustrating having to constantly go to appointments and tests, the fact that I could afford it all was truly a blessing that I took for granted. When I lost it, I found myself aggravated at those who were chronically ill and complained about getting spectacular medical care. I felt my anger deep in my stomach, screaming out, “shut the hell up! At least you can get medical care, I have a massive pile of disease and sickness and I have nothing to help me at all!” A tiny Hulk would often take over inside me.

When I was accepted into the mental health program and received my social worker and psychiatrist, at first I admit I was annoyed by how little they could do for me. However, I quickly reminded myself that I had lost everything, and began to feel a different sort of privilege.

(To read the rest of Privilege in Flux- Part One click here!) 

When we talk about privilege, the first two things that usually come to mind are racial privilege and income based privilege. While it causes quite the uproar, these are things that need to be spoken about. I’ve also found that for most people of any situation, it’s extremely easy to point out the privilege of other people while failing to point out your own. I’m not going to do that.

Here’s a list of things that positively impact my privilege:

  • I live in an extremely rich country
  • I am not homeless
  • I have a car
  • I have a cell phone and internet access
  • I have access to clean water and safe food
  • I have light colored skin (I do not mean that I am BETTER because I have light colored skin; but I do mean that it is an unfortunate fact that in America, certain privileges are given to those with lighter colored skin. It is a deep, immoral flaw in our American culture and system that is in dire need of uprooting. )

And here is a list of things that negatively affect my privilege:

  • I live in a rich country but am under the poverty line
  • I am chronically ill and disabled (without disability benefits)
  • I am female
  • I am in a racial minority
  • I am in a sexual identity minority (even within the LGBT community itself)
  • I no longer have parents/ family aside from my sister and grandmother
  • I have minimal healthcare
  • I do not have a steady job
  • I do not have a steady place to live

I’m sure there is more to add on both sides, but those are just a few examples. As I have grown older and what I hope to be a more thoughtful human being, I have noticed quite a bit about how privilege works for individual people. For many people, but not all, privilege is constantly in flux. While we’d like to assume it is easy to look at someone and immediately point out their privilege or non-privilege, the reality is, it isn’t. Some parts are easily seen on the surface but many aspects of human life are not. I’m learning to accept my privileges and non-privileges, as well as each way they affect my life on a daily basis.

Getting into my mental health program, getting my social worker and starting to have appointments with my psychiatrist in an odd way made me feel privileged and non-privileged at the same time. I saw the other people in the waiting room with me and thought, “I’m not struggling as much as them, am I?” My social worker constantly reminds me that if I wasn’t, I would not have been deemed an emergency case. Admitting what you don’t have is rarely easy.

It was only a few weeks ago that I was finally accepted by Medicaid after six applications within nearly two years. I was brought to tears by the revelation that the Emergency Room was no longer my only option for medical care, that after three months of being half blind I could afford a new pair of glasses, and that despite Medicaid not covering everything I need, it would at least (hopefully) get me into a better place than I had been for the past year.

I try to avoid getting political on my blog; that isn’t what my blog is about. However, politics affect me constantly because being chronically ill and poor, I rely on government funded aides like Food Stamps and Medicaid in order to survive. Especially lately, I have heard so many people in the media, in daily life, and even on bumper stickers expressing their loathing for people such as myself, those of us who use government aide in order to get through our lives. They are convinced that we are despicable frauds, unmotivated and devious, sucking money out of our already struggling government.

They don’t understand the sinking in my stomach and shame I feel every single time I use my Food Stamps card. They don’t feel the rejection I feel when I am reminded I can’t to go to any urgent care or hospital when I’m struggling with my chronic illnesses that I will never be cured of. They won’t know how many tears I have shed over the fact that because I am young and disabled, I have to work ten times as hard to do even the simplest jobs in order to just barely survive. I feel like I’m fighting with all my might only to get absolutely nowhere. Meanwhile, I’m crumbling inside, emotionally, psychologically and physically as I’m being told how “lucky” I am to be so young.

I wish more than anything that I could afford all the healthcare I need, my own place to live, and my own food. However, many of the events that have happened in my life occurred without my permission and were entirely out of my control. Every day I wake up wondering what I could have differently in order to have not be born into an abusive family or to not be born with as much illness as I have been given. Every night, I find my way to the same realization that there was nothing I could have done. What I can do is try my best to live despite it all and fight with every bit of stardust I’ve got in hopes that it will lead me to a better life.

This post has been emotionally exhausting. As I fight my tears I hope that if there is one thing people take from these past two posts, it is that many versions of privilege are always in flux, and regardless of how intelligent you are, you cannot always assume you know the amount one has. Believe the people that tell you they are sick. Believe those who are trying in earnest to improve their lives but keep getting pushed down. Believe those who still seem to get nowhere after working harder than anyone else, and who are having trouble finding a reason to keep living. We are fighting harder than you could ever know.

Believe in us. Please.

Relevant: click here to read a post I did a while back about comparing lives and life as a twisted contest. I feel it is extremely pertinent to this subject.

 

What’s the purpose?
It feels worthless.
So unwanted, like I’ve lost of my value.
I can’t find it, not in the least bit,
And I’m just scared.
So scared that I’ll fail you, and sometimes I think
That I’m not any good at all.

And sometimes I wonder why,
Why I’m even here at all?
But then you assure me I’m a little more than useless.

And when I think that I can’t do this,
You promise me that I’ll get through this,
And do something right,
Do something right for once.

~ More Than Useless – Relient K 

Eleanore Vs. An Early Morning Adventure

Disclaimer: This post was written on December 22 at 6:00 am. The timing of my posts may be off during my stay in Michigan. 

Darling readers, 

It’s a real live Eleanore coming direct to you from the St. Louis airport!

I have not received my glasses yet and am still struggling with my vision, but since it is obscenely early in the morning my eyes are allowing me to see past the astigmatism haze for the moment. I have found that my vision worsens as the day goes on, but for now I am hoping it lasts long enough to write a decently sized post before my eye go all wibbly again.  Friggin’ astigmatism.

So much has happened in my life and my mind is bursting with all the posts I am desperate to get out of my tingling fingers and onto a virtual page. In a matter of two weeks my life has changed dramatically and so many big and little things have happened, all of which have affected me tremendously as a whole. Since I will soon be finding myself in Michigan, though, there will mostly likely be a few mini posts about my trip before I start in on the rest of my life. But stayed tuned, because it’s going to get good. 

For now I will put focus towards my current state, which is Missouri, in an airport, fighting a CFS relapse that has taken me over with a vengeance. Considering the last two weeks have been mentally and physically stressful and exhausting, I knew it was inevitable that I would eventually relapse; my only wish is that my disease would have been more polite and waited until after my trip to torture me.

Despite the abundance of pain and lack of sleep I am content sitting here in the airport, eating salty snacks to prepare my blood pressure for my plane ride. That’s the thing about orthostatic hypotension; it doesn’t like when I change from sitting to standing. Changing from land to air is significantly worse, however it does give me an excuse to snack as I please. While I would rather be less sick, the delicious silver lining helps a little. 

I’m sure it is not surprising when I say despite my love for travel It is exhausting and difficult to prepare for. Anyone who has chronic illness knows that we must put even more thought and care into traveling than people already do. However, considering the fact that I rarely get the chance to travel anywhere, the fact that I even have the privilege to go on this adventure has me feeling elated and sparkly as can be.

For this privilege I have my dear friend ShawnEShawn to thank. After our acquaintance exploded into a spectacular friendship, he invited me to spend Christmas with his family in Michigan as I was not totally sure where I would be spending it were I to stay in St. Louis. It was a lovely offer, but of course my anxiety and PTSD were all screaming, “No! No! No! Something new? traveling to the unknown? That’s far too terrifying! Get back in your bed and hide in a blanket burrito this instant before we explode your insides!” So, after that mental clusterfuck I politely declined and recoiled back into my Sarlacc pit of blankets and pillows. Spoiler alert: I am the blanket Sarlacc. 

Fortunately, ShawnEShawn is a particularly persistent human being in the very best of ways, and he kept encouraging me to come, unrelenting in his kindness.  Still I was resistant thinking of all 4594i40409649059o45095 things that could absolutely go wrong with my health, my travel, and my everything. Are there some letters in there? Probably. Well, that just goes to show you how my mind was malfunctioning. 

One of the most annoying traits I have caused by PTSD and my anxiety disorder is that I am in constant need of repeated affirmation. I not only need it repeated by the same people, but I need it from multiple people. While ShawnEShawn was extremely convincing and reassuring, my odd mind did not think it was enough. So I talked to my best friend. And my social worker.  Aaaaand my counselor. Aaaaaaaaaaand my landlord, Mark, who knows everything there is to know about anything (at least, so it seems). Finally, at around 6p.m in a basement, Mark and I decided it would be a spectacular opportunity for me, and there weren’t any logical reasons for me to refuse it.

I promptly went upstairs, called ShawnEShawn, and not a few hours later my flight was confirmed. Now here I sit creepily people watching as I groggily type out my words in my Pages app because apparently this airport no longer has free WiFi. Like what the fuck is that shit about exactly? Anyway. I digress.

By the time I am able to post this I will hopefully be inside Walled Lake, Michigan. I am excited to see what a new place is like and especially looking forward to the prospect of a nap, because waking up at 4:30 in the morning is NOT the business, as the cool kids say.  This post may not be eloquent, but at this early in the morning, I’m thankful I can put together cohesive sentences at all. At least…I think I have; editing later on may prove me wrong.

To infinity…and beyond!

~Don’t act like you don’t know where that’s from.

Eleanore Vs. Unicorns (Yes. Unicorns)

Dear fabulous creatures,

Life has been crazy, which nowadays is normal for me. Does that make it less crazy? I’m not actually sure…but I digress. In a wonderful turn of events I’ve found a place to live, and even though it isn’t ideal, it is far better than the situation I’m currently in, so I’m trying my best to fight the part of me that’s a grumpy little asshole and be optimistic. My optimism is laced with anxiety and stress; in the next three weeks, I’ll be working both my jobs, packing up, moving, then traveling to Michigan to spend Christmas with a wonderful friend. While most of these events are positive, it all is going to take one thousand percent of my effort, which converted into average person effort seems inadequate. Through all the hustling and bustling I’m left wondering, can I really handle all this?

I have written before about minimizing, gas-lighting and other annoying things people do to us chronically ill folk. However, I don’t think I’ve brought up one that I’ve been experiencing especially often lately. I call it the Unicorn Problem. If that phrase means something else, forget about that definition because mine is better. Okay, well I don’t know about that, but just go with it, okay?

Between my chronic illness, my abusive family and then loss of family, break-ups, moves, and other tasking surprises my life has presented me with, I’ve almost always had to exert myself more than I really should. I push myself in the words of Deadpool, putting in my “maximum effort,” and usually regret it. I end up in CFS relapse or some version of sick that makes accomplishing my goals even more difficult than it already was. When I talk to those I care about, they often reply, “just believe in yourself, you’ll get through it!” While this is a potentially harmless, rainbow and dolphin-filled exclamation, they’re missing the point (or should I say horn? No?…sorry).

I completely agree that we should absolutely believe in ourselves. Having faith instilled in us that we can overcome great obstacles can keep us moving forward through even the most nightmarish periods of life.Not to mention having the support of the people I love is immensely important to my wellbeing. My problem with telling a chronically ill person this, though, is that it insinuates that I am somehow responsible for my physical pain and illnesses, that I’m not trying hard enough, or that I need an attitude adjustment. Furthermore it assumes that I will “get better” from my chronic illnesses while denoting how much blood and glitter I put into every bit of stardust that my life is comprised of.

Allow me to say it louder for the people in the back: Chronically ill people are not unicorns. No matter how hard we believe, stomp our feet or clap our hands, we will not magically become less sick. I’m not saying that our minds don’t affect our bodies; on the contrary, I constantly affirm how emotions and mental illnesses cause physical and mental suffering. But again, the problem lies in how flighty the phrase, “just believe in yourself,” truly is, and how it often feels like a dagger being shoved into my heart, even when it is meant as innocently as possible.

If you’re wondering what a better phrase may be, how about saying, “I understand that you have a great deal to overcome, more than most, but I believe in you, and I know you’ll get through this.” Acknowledging pain is unbelievably important. A few days ago I wrote a fairly depressing post, and as I’ve mentioned before, I often feel immediately guilty after hitting “publish.” I must constantly affirm that the very reason I created this blog was not to romanticize illness. I created this blog to be a raw reflection of my life, for all the goodness and all the misery, because every part of my life contributes to who I am as a person.

As I reach the end of this post I come to understand that the largest reason I find the Unicorn Problem insufferable is because being someone who is chronically ill and in constant pain takes more faith and mental strength than many others realize. Those of us who are chronically ill have to wake up every single morning and make the decision that we will tirelessly fight through our days despite all our illness, and making that decision is never easy. Nearly every morning I find myself wishing for more rest as it seems I am always lacking, and feel pain surging through me. Despite it all, I have to convince myself to get my day started. If that isn’t a testament to how much I believe in my abilities, I simply don’t know what is.

I may not be a unicorn with a luxurious mane, a spiraling horn and a satin coat. However, I think that myself and others like me are equally impressive. The strength it takes to be like us is certainly something extraordinary, and even if others don’t acknowledge it, we always should. For all we have overcome, all we are currently fighting, and all that we will do, every part of our lives deserve to be seen and heard. If there is one thing our society needs more of, it’s belief that every part of a human life is important, even the not so pleasant parts.

Whatever you are fighting or suffering through, if you feel that you are lacking acknowledgment or belief, know this my darling reader; I know how alienating and alone being constantly unwell feels and I see you. I believe in you just as I believe in myself, and that will never stop, even on the days that every single part of my body is screaming in pain. I will scream too, and I will cry because of my discomfort, but even if I lose a thousand times over, I will keep going. I will always keep going not because I’m a unicorn, but because I am me, and after an entire lifetime of self deprecation, I’m finally starting to realize that that’s pretty spectacular, too.

And this will be,
The one moment that matters.
And this will be,
The one thing we remember.
And this will be,
The reason to have been here.
And this will be,
The one moment that matters at all.

~ One Moment – Ok Go (if you haven’t seen this video, see it. It’s astonishingly beautiful). 

 

Eleanore Vs. Night Time Sleuthing

Dear two legged creepy crawlies,

For most of my life I have taken pride in being a “night owl.” I’ve always loved sleeping in late and staying up later. Mentally I’ve always felt more capable of focusing at night, not to mention more mentally active. As I grew older and more unwell, this began to contradict the fact that physically I feel more sick as the day progresses. When I was younger, my first love was practically nocturnal; I’d stay up all night with him, go to school, come home, nap for hours, and proceed to do it over again. I enjoyed it for the most part (minus the getting in trouble with my parent on a regular basis). Now, the idea of staying up all night seems unfathomable, because I simply don’t know how I’d survive for that long. It’s almost as if my body has a dial being slowly rotated towards zero. When I finally reach zero, I can hardly function.

As I have become more open about my disability and chronic illness, I have come into contact with others who relate to me. I’ve found that regardless of how different our illnesses are, we still seem to have commonalities; one of them being that for many of us, night time is when we feel the worst. This has been especially true for me lately. The past week, I’ve been in such agony that by 8pm I could hardly walk and would have to take a muscle relaxant. Due to being a curious little monster, I have decided that it’s time to do some internet sleuthing and figure out just why this is. To the Magic Google Machine!

To be honest, I hadn’t the slightest idea where to start my research. I began as literally as possible. “Why do people feel more sick at night?” I asked the MGM. “Bitch, I don’t know, I’m not Google! Oh…wait…yes I am,” it replied. After it was done being extremely rude, it found several different articles somewhat in the realm I was looking for. I discovered that it seemed literally every type of illness tends to get worse at night. Asthma, Arthritis, colds and flus, even heart disease. My research also brought up our Circadian rhythms, which may be the connecting culprit as to why we feel worse. This wasn’t quite enough though, and I felt a bit stuck. When I don’t know what to do about medical things, I run to one of my favorite human beings on the entire planet, my dearest friend Chris. He’s one of the most intelligent people I’ve ever met, and since he’s in medical school, he’s one of the few people I can talk to about these medical things who 100% gets it. He may not always have answers, but he always tries to bring me understanding, and I am forever grateful for it. It’s also nice that he never minds me texting him, “QUESTION!” at any given moment.

Chris brought up the term sundowning, a symptom I’ve recently become familiar with since my grandmother has Alzheimer’s. Sundowning basically means that the person feels worse the later in the day it gets. before my grandmother was being properly cared for, she would be fairly pleasant in the daytime, but as soon as it became night she would be anxious, aggressive, and heartbreakingly filled with sorrow. Chris also explained that while no one really knows why we feel worse at night, part of it could be that sleep allows our bodies to repair themselves. The longer you’re not sleeping, the less of a chance your body has to work on building you back up and the longer it has been since the last shift. In the case of the chronically ill, considering our bodies are always fighting, our immune systems really have a big job on their (metaphorical) hands.

For some illnesses it’s a bit more obvious as to why they worsen at night. If you have asthma, the fact that you are reclined when sleeping and your airways are cooling and narrowing can aggravate the condition. As for other illnesses, the answer isn’t so clear. There’s tons of theories, of course, but the answer ultimately is, well, we just don’t know.

Between all my diagnoses and the symptoms that continue to go unanswered, “I don’t know,” is my least favorite response. That’s the problem with the medical world; there is so much we have to discover and so much left to understand because our bodies are extraordinarily complex machines. We are constantly making advances, and of course as a perpetual patient I am thankful, but there’s also so much that’s still unknown. As Hank Green says, the most intelligent people are often the most content with admitting they don’t have answers, because only then can they be available to learn.

While none of that is much comfort, the one fact that I can assure you of, my darling readers, is that you are not alone in your pain and struggle. If you feel that your symptoms worsen at night and disrupt your activities and sleep, it isn’t all in your head. There is loads of proof that it’s common to feel more sick at night, and while it’s unclear as to exactly why, it is very real. As someone chronically ill it’s unfortunately easy to be invalidated by my own doubt, others, or even by those in the medical field on occasion. For most of my life I was told I was dramatic, a “giant baby,” a hypochondriac, and that I was blowing my health issues far out of proportion. 15 diagnoses later, I’ve proven most of those people wrong, whether they admit it or not.

I’m hoping that as I grow older and learn to function better with all my illness, I’ll be able to live the best version of my life. I also have a great deal of faith in the medical community. While our medical system is deeply flawed and not every doctor and nurse has given me positive interactions, there are many more who are working as hard as they can towards understanding and helping those who are sick, and for the right reasons. As for us sick ones, for now the best we can do is support ourselves, educate ourselves with the knowledge we do have, stay open minded to what comes next, and most importantly, pour love on each other.

I’ve got nothing to say,
I’ve got nothing to say.
I’ve got nothing to give,
Got no reason to live,
But I’ll kill to survive,
I’ve got nothing to hide.
Wish I wasn’t so shy.

~Ask Me Anything – The Strokes

Sources:

My amazing friend Chris who tolerates me more than most.

Why Illnesses Get Worse at Night: From arthritis to colds and even heart disease, changes in your body clock – and the fact you’re lying down – can send symptoms soaring By Thea Jourdan

Asthma and Sleep – National Sleep Foundation

The Arthritis Foundation 

 

 

 

Eleanore Vs. CFS Relapse

Dear sentient soft things I can only assume are humans,

I’ve spent most of my day asleep. Before that, I spent most of the weekend in terrible pain. The last few days I’ve been abnormally weak and exhausted (abnormal for my personal state, that is, since everything about me is abnormal compared to average), and my body is overtaken by the sensation that there are razorblades in between every one of my joints. It’s difficult for me to concentrate, my limbs feel like jello, and I’m completely depleted of my general being. When I do sleep, I only feel a teensy bit better. On top of all that, I have body aches, sniffles, and everything that points to either a cold or flu. I’ve had periods like this before, but I’m only now beginning to understand that these episodes aren’t just random. They are Chronic Fatigue Syndrome relapses. According to the internet, they can last anywhere from a few days to a few months.

There isn’t really an ideal way to handle a relapse, and it seems that most aren’t even sure as to what causes them. At best, it is suggested that a person rests as much as possible and takes some extra B12. So, I’m left to feeling much like a zombie, trudging my way through my symptoms alone.

I try to do everything I can in order to prevent myself from sleeping my life away. However, when you’re chronically ill with a bazillion conditions including Chronic Fatigue Syndrome, you haven’t got much of a choice. Fighting sleep only makes me feel more unwell, and the entire situation altogether makes me feel like my body is shutting down. I have to sleep.

When I lived with my abusive family I was constantly ridiculed and patronized because of my need to sleep or stay bedridden for my own wellbeing. “I wish I had time to lay in bed all day,” was a favorite insult of theirs, to which I always thought back , “is that so? Do you also wish your had lightning and razorblades stuck in your spine and joints? Do you wish you were chronically nauseated? Do you wish your body felt like it couldn’t function properly and your limbs weighed a ton each? I’d rather have a healthy body and be busy than be chronically ill in bed.” Less eloquently, I’d also usually think, “go fuck yourselves!” These condescending phrases infuriated me; but only for so long because after a while, even being angry is too much work when I am this sick.

I’m especially aggravated by the fact that when I was diagnosed earlier this year, the doctor told me I was positive for the syndrome, told me that it will come and go, and that was it. I got absolutely not information or assistance in dealing with this illness, so all of my knowledge has come from either personal experience or from inputting information into the Magic Googly Machine. I’m not even sure what sort of doctor I would need to see in order to get more help for this syndrome, or if they’d help at all. Though, I suppose that since I have no money or health insurance, I shouldn’t worry about it for the time being.

This post is going to be far shorter than my usual just for the sake of exhaustion. I did write a longer post about Chronic Fatigue Syndrome a while back which you can read here, just click the blue! For now, I suppose I just wanted to share what it is like to be in the midst of CFS relapse. In summation- it totally blows.

If you suffer from CFS like I do, how do you handle relapse? Have you found any way to deal with it besides just sleeping through it all? Let me know in the comments!

I’m sleepy.

~Eleanore – Sickly Stardust (okay yes that’s me and sort of cheating but I am so tired). 

Eleanore Vs. Chronic Fatigue Syndruughhh

Dear chronically fabulous clumps of stardust that read the contents of my heart and mind,

I am one sleepy bunny, much like the one pictured above. The past few days my arms and legs have somehow felt both like spaghetti and like lead. I’m not sure how that works, but it’s happening. I feel so weak and heavy, and all I’ve wanted to do is sleep. This is not the first time I’ve experienced suddenly being filled with lead and being drained of what little energy I already have. In fact, these mysterious episodes have happened several times a month since I was 13.For those of you who don’t know my current age, I’m now 26. That’s a long time to feel this sick.

Among all my illness one disorder I suffer from is Anxiety Disorder, and because of it, I’ve been banned from Googling my illnesses to avoid becoming anxious over my health issues.  However, this is frustrating, because the most recent illness I was diagnosed with is Chronic Fatigue Syndrome. When the doctor told me I had it, I was told there was nothing be done, and was left alone. So here I am, scrambling in information purgatory. I’m not allowed to research illnesses myself, but doctors only give me a vague glimpse of my diagnoses and kick me out the door. What’s a sick girl to do?

Well, this sick girl said, “fuck it,” and Googled anyway, anxiety and all.

It’s incredible that I have an entire system of information within my phone and computer, yet I more often then not completely forget about this privilege. As it turns out, this incredible system called the internet (but you’ve probably never heard of it *scoff*) is for more than listening to New Found Glory on YouTube and fawning over pictures of kittens and puppies. I can actually get important information out of these machines! After some research, I discovered that many people who suffer from Chronic Fatigue Syndrome are often floored by the feeling of becoming weak and heavy, their limbs, just as my own, feeling like they have been dipped in concrete.

I also found that many people with Chronic Fatigue feel dazed, as if they are in a constant state of dreaming. Most of my life I have felt this too; I often would describe it as my soul and body being separated. Since I was a child, I felt as if my body remains here on Earth, doing all the human things it is expected to do, while my soul is somewhere in the atmosphere, floating above me. I imagine we are connected by an invisible string of stardust that keeps us tethered to one another, and some days I feel closer to it while other days I feel farther. It is never where it should be though, which is safe inside me, and on the worst days I fear our tether may be cut and my soul will be lost entirely. I explained this to very small amount of people in my life, for fear that most would think I was insane. Only one person in my life ever actually understood this feeling, though we are no longer friends now, which takes me from one person understanding this feeling, to zero.

Last year,  I told a counselor this. He suggested because I have PTSD I may have developed some type of dissociative disorder. But now I cannot help but wonder, is this disconnect the work of Chronic Fatigue Syndrome instead? Oh, how the plot is thickening.

The only reason I had gotten tested for Chronic Fatigue to begin with was because I told a doctor that despite my many diagnoses, even with all that I had been labeled with from Celiac Disease to Vasovagal Syncope, there were still symptoms that did not match any illness I knew I had. A simple blood test revealed that Chronic Fatigue was the newest addition to the villains inside me. This was nearly six months ago; but because I now have no insurance and again, have been told not to research on my own for fear of aggravating my anxiety, I’ve been left in the dark, suffering from an illness I’ve unknowingly had for years.

Upon using the magical Googly machine, I have not only discovered that Chronic Fatigue Syndrome is responsible for me being filled with lead/concrete/other heavy materials (why couldn’t it be Adamantium?) and possibly the reason my soul is sailing among the stars rather than spending life with my body like all the cool, healthy souls do, but it is also the reason I have constant joint pain in the places where I have not been diagnosed with arthritis and why my sleep has been off since I was a teenager. If anything, I can at least take comfort in the fact that I am not crazy for feeling and thinking what I have for exactly half my life. Having an explanation for my sickness also means that I am not alone, regardless of how alienating chronic illness feels.

It is especially unfortunate that like most of my illnesses and diseases, Chronic Fatigue Syndrome is yet another illness that people relate more to the Easter Bunny than to a medical condition. People such as myself have to withstand ignorant comments such as “but you can’t be so sick, you’re too young!” or, “but you don’t look sick!” which after ten years have gone from minor annoyances to me thinking, “oh my god I am going to scream like a banshee because you are so irritating, please get the hell away from me and stop talking to me for the rest of forever.” The only thing that makes suffering from constant pain and sickness even worse is being told that others,whether they are strangers or those close to you, don’t believe you.

Sometimes, I wish the associations that work for our diseases and illnesses would focus on curing ignorance and stupidity towards the disabled rather than trying to cure our illnesses themselves. Most of the time, no one has any reason to not believe someone when they say they are sick. So often my own family,despite seeing me taken away in ambulances, collapsing from pain, and tied up in tubes and wires in a hospital bed somehow still believed I was faking or overreacting. Right before I moved away, they went from those thoughts to thinking that I was just insane, and would threaten me with calling cops and throwing me in a mental hospital where I’d “stay forever” because I was sobbing from pain. Clearly a criminal act.

I am not “crazy,” and I am not mentally disturbed because I am physically and somewhat mentally sick.  However, I am exhausted and hurting, and I wish more than anything that those who say they care about me would have empathy and belief towards my pain. I wish there was some type of Sci-Fi machine where I could input every illness I’ve been diagnosed with and hook it up to someone’s brain just for a while so that they could truly understand what I feel. Not forever of course, because I don’t think anyone should have to suffer as I and others like me do on a daily basis. But just for a few moments, I wish that those I know could feel what I feel. The flashbacks spinning in and out of my mind, the impossible weight of my limbs, the pain in my jaw hinges, the stabbing, aching in my spine (and those are just a few symptoms). Currently, a machine such as this does not exist. Maybe it will one day in order to inspire empathy and understanding within the human race.

Or maybe I just watch too many movies and play too many video games.

I’m gonna call on somebody, in a cry or plea.
Could be something discovered in reality.
I couldn’t tell ya, it hits us in different ways.
I know we’re young but I feel so old,
Get me the doctor, call me the doctor.
One by one we become undone,
Get me the doctor, call me the doctor.

~Doctor – Finish Ticket