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.

Lonely is a Strong Word

Dearest readers,

I have been extra introspective (extraspective?) lately. I’ve gone astray in my own mind with the past, present, and future. It’s almost like the Christmas Carol ghosts are wandering about my mind, though they haven’t given me a good reason as to why (and it is not even Halloween yet, so the season is no excuse for them, either). In times such as these I’ve learned to do my best to drift through it all until my mind calms down, and, in the words of an inspiring, little blue fish, just keep swimming.

Last night specifically, one topic was on the main stage of my brain- the concept of being alone. For most of my life, I have always been alone to some degree. It took me ages to realize being surrounded by people was not enough to make a person, especially a chronically ill person, feel supported and loved. I can think of countless times when I was within a group of people, whether it be family, friends, or other, and yet felt completely empty and alone.

On reflection, it seems this was because more often than not I was around the wrong sort of people. Sometimes I was around people who were nice, though not on the same page as me, while other times I was around those who were physically and emotionally abusive. I was also with people who were honestly trying their best, but just couldn’t understand what I was going through because they had never experienced what I had, and didn’t quite know how to handle me. And so, I remained alone.

The past few years I have lost a lot of people in my life for various reasons, and it has been rough on my heart. It’s difficult thinking you are close to a person only to find out the relationship (whatever type of relationship it might be) was unhealthy and skewed. Slowly I am learning that being mistreated is not worth being able to say you have people around you, which is a useful less to learn, though going through the loss cycle multiple times  has made me feel a plethora of confusing emotions.  While logically I know I am healthier without abusive people in my life, it doesn’t hurt any less. Then there is also the fact that I have anxiety disorder and depression, both of which are talented in making me feel alienated and lonely in the worst possible ways.

All of these experiences have led me to note a defect in my own personality, where nowadays I seem naturally inclined to feeling completely isolated and like I’m doing this whole life thing solo. It’s easy to think that I have done everything by myself when now, I have no parents or family (save for my darling grandmother) to guide me, and even when I had them, they were far from helpful. However, this default can make me forget those that have worked to the best of their ability to ensure that I am not alone at all, and that just doesn’t seem fair.

My boyfriend and his family, for example, have done nothing but shower me with love since I’ve met them. Emotionally, they made me feel at home immediately, and later on gave me a physical home when I had nowhere else to go; were it not for his grandmother, I would have been one step closer to living in a homeless shelter, (though just last week another dear friend said she would have never let that happen to me, which only furthers my point).

There’s also the small pile of friends who jumped to help me move twice within six months (once in an ice storm) even though I didn’t have the money to pay them with beer or pizza, per the moving custom. There are my friends back home, like the one who has literally kept the same txting conversation going with me for a year, or another who for the past two years has always, always made the effort to call me when she can. Not to mention my Social Worker and her agency, who have brought me up from some of the darkest years of my life.

It’s true that I still do a great deal on my own, and I try to be independent as I can. But sometimes I need help, and in the most dire times, these people and the other great humans in my life haven’t let me down. At my worst, when it seemed like I was absolutely alone here in Missouri, I had several friends from back home that would always answer my calls when I was in self destruct mode, leaking heavy, painful tears.

Though numbers wise I have less people in my life now than I ever had before, I have never been less lonely, because the people I do have do so much to make me feel supported and loved. They try to help me find solutions when I am stuck, they actively listen to me when I am unwell and need comfort, and they consistently reassure me that despite how bleak my life may look, I’m never truly alone. I hope that the way I live and treat the people I care about constantly proves my gratitude.

I’m living proof that in the absolute worst of times, there is still another way, and good people to help us through them.

Hidden Hope

Dearest friends,

It’s no secret that I have had depression my entire life, and that my physical illnesses can certainly cause it to be more prevalent at times. This past month I have been battling one of the worst Chronic Fatigue relapses I’ve ever had. The relapse caused searing pain especially in my fingers, hands and arms, while also aggravating my  Carpal Tunnel. All of this made writing just about impossible. Therefore, I had a great deal of thoughts floating about my head with nowhere to go, and my mental health suffered along with my body.

Depression affects people in a variety of ways; while most of the time I am high functioning, there are plenty of days my depression feels impossible to defeat. This past relapse, however, there was much that helped me survive it all; one experience in particular was extremely helpful yet unexpected.

During the first week of the relapse I went to a concert with my boyfriend and his father. While I normally enjoy concerts, I was struggling to keep my energy up and the pain off my mind. Several times I had to leave the main venue to escape the intensity of the night. Twice my boyfriend went with me, but the third time I stepped out on my own so that he could stay with his father. I ended up sitting in the hall talking to a lovely staff member named Stacey, and suddenly I was deep in conversation with her. I admitted I was unwell, and she was kind and empathetic while I sleepily explained more about my conditions.

As the conversation continued, she explained that she knew precisely what it was like to be chronically ill considering she has several issues herself. She also knew what it was like to have a lack of support. We both lamented for a bit, before she told me that despite her serious struggles with her health, she had been married for 15 years and had seven children; that’s right- seven, which included two sets of twins. That alone made me think she was a real life Wonder Woman.

Speaking to her was inspiring; after all she had suffered through and all she still goes through, she had managed to build a beautiful life that though was not easy, was what she obviously loved. I told her she gave me hope, and had unknowingly lent a hand to uplifting me from my depression. She was altogether lovely. Hanging out with a person like myself in a hallway was not at all what I expected to do that night, but I am so incredibly pleased that it happened.

I left the venue feeling physically exhausted yet mentally refreshed. The rest of the night, as exhaustion set in, I kept reminding myself that if she could have the life she dreamed of, I could too … maybe minus the seven boys. No matter how much anxiety I have or however intuitive I think I am, life still ends up being surprising in ways I can never imagine. These experiences constantly remind me that hope is hidden in daily life. The way strangers interact with one another changes lives every second, yet this is a fact that we often overlook as human beings. I am learning to be thankful for the hidden moments in my life that bring me rays of hope, reminding me that my daily struggle is always worth it.

Of course, this lovely human was not the only one to help me through my relapse. My extraordinary boyfriend, his family and our friends all encouraged me and were wonderfully kind to me during my recovery. Warm hugs and listening ears are vital weapons in the battle of surviving chronic illness, and the people that lovingly give them will never know just how much it makes it easier for me to live. I aspire to share my experiences so that as my favorite band always says, I can spread hope like fire.

 

 

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. 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 Vs. OH MY GOD I FEEL SO SPECIAL AND SHINY

Dear WordPress!

Yesterday was a difficult day which was a bit frustrating as I wasn’t entirely expecting it. For the most part, I can predict when some days will be harder than others, at least to some degree. I did not predict yesterday, so I was exhausted, mopey and disgruntled.

BUT THEN. 

My phone said “BOOP” and a notification popped up from WordPress. It was from one of my favorite bloggers, Ms. Ribbonrx, also known as the lovely Laura Tietz.

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I was pretty fucking thrilled. I actually had gotten this once before from another blogger many months ago and I was going to do the post but I forgot because I’m a total jerk (I forgot because I was think I was especially sick at the time) so this time I wanted to be absolutely sure I did this right. So here we go!

The Versatile Blogger Award Rules:

  • Thank the blogger who nominated you
  • Include a link to their blog
  • Write a blog post and display the award
  • Reveal seven facts about yourself
  • Nominate other bloggers for the award
  • Notify each blogger of their nomination

First and foremost thank you Laura for nominating me because it is a pretty big deal to my squishy little heart. I’m always thankful for any kindness and acknowledgement I receive, especially for my blog ,since this has become so dear to me. Laura is a Celiac who has recently undergone brain surgery for a tumor, and unfortunately has another coming up. She is astoundingly brave and is a wonderful writer in that she is both honest and raw while still being articulate about everything she experiences. I’m consistently impressed with not just her blog, but with her very existence. Click here to be taken to her!  

As for seven facts about Eleanore:

  1. My favorite colors are black, mint green, and turquoise, mint green specifically because it was the color of my grandmother’s wedding dress.
  2. I have a freckle the size of a quarter on my left shoulder blade; it’s my birthmark, so I have been told. I have many, many freckles, but it is by far the largest. I used to be terribly self conscious about it, but after many years it’s finally become one of my favorite physical attributes. Bonus fact: if you take a pen and connect all the freckles on my right arm, they create a silhouette of California. Don’t ask me how I figured this out.
  3. I have a little book of life goals, favorite things, places I want to visit, nice people I’ve met and nice things people have said to me. It really keeps me going and helps me to combat my anxiety and depression. It keeps me moving forward and I recommend anyone make one for themselves. Especially since my memory is not so good, reading the nice things that have happened or have been said in the past is always a lovely surprise.
  4. When I was little one of my favorite movies was Jurassic Park, but I watched the whole thing with my hands over my ears because the dinosaur roars were SO damn loud. I’ve always been sensitive to sound, so while the dinosaurs never scared me the sounds were jarring. Spoiler alert: I still do that when I watch Jurassic park and they’re still one of my favorite movies.
  5. I adore the sound of accordions. I blame the Austrian half of me.
  6. I love talking on the phone to my friends. The days that I get phone calls from friends make my day, and on the worst days I often think, “man, I hope I get a phone call.” When I do, I’m ecstatic. When I don’t, I’m a sad little puppy. It’s not the act of just simply talking on the phone, it’s  having incredible conversations that set my heart aglow with people that I care about. I crave amazing human interaction and nothing beats it. Except maybe cupcakes and warm blankets. When I have all three I’m the happiest little creature in the universe.
  7. Clothing with buttons and pockets make me absurdly happy. I’m hoping my wedding dress, whenever I get married, will have one, the other, or ideally both.

Now for my nominations!

  • I was going to nominate Laura again, but I suppose I can’t. So whatever. 
  • Depression Comix – This blog is truly one of a kind. The artist, Clay, creates comics in regards to what it is like living with depression, and I’m always amazed by both the beauty of the comics and their accuracy. This artist is immensely gifted in his ability to convey what it is truly like to live with depression and other illnesses.
  • Annoymously Autistic – This fabulous girl, Anna, blogs about her experiences living with Autism and I have learned a great deal from her blog. I admire her so much for her ability to embrace her Autism and how she dares to tell the world that there is nothing wrong with her, but that she is simply different. She is the change in the world that I feel we desperately need, and I think she has a wonderful impact on society.
  • JamisonWrites.com – I have just started to follow Jamison but his story is truly incredible. When I read his about section, at first I thought, “why on Earth is this guy following me, he’s exactly the opposite of everything I am.” As I continued to the end of his about page, I was floored by his real life plot twist. Turns out, we have more in common than I could have ever possibly imagined.

Lastly, thank you to the person who also nominated me months ago, I feel terrible that I cannot remember who it was and cannot find the notification, but I promise it means so very much to me that anyone would even think of my blog to nominate. This blog has been, especially this year, the highlight of my life. I am tremendously thankful that I have a following, that people enjoy my blog and actually want to hear my stories. I’m also thankful for the friends I have made and the stories I’ve been fortunate enough to hear from others. I hope that more of all of that keeps coming my way.

From the bottom of my heart, a thousand times over, thank you.

 

 

Eleanore Vs. Days Like These

Dear inhabitants of the Hundred Acre Wood,

I must have turned into Pooh Bear overnight, because my stomach is about as rumbly as it gets. Actually, as I stated on Instagram, it’s less Winnie the Pooh and more Bioshock-y. It feels like a Big Daddy is plowing straight through me. If you don’t know what a Big Daddy is, he looks like this.

bioshock-bouncer

Yeah…having that dancing around in my abdomen is not charming. I woke up in the middle of last night to a Vasovagal Syncope frenzy, writhing in pain and feeling positively doomed. Thanks to the fact that I have been through this a billion times, I was able to actually avoid fully losing consciousness. Out of all my episodes, this was only the second time I was able to fight it. I feel like a mutant who just learned to control their powers. Not today, Satan!

Despite avoiding passing out entirely, the episode still takes a while to come back from.  I was especially disappointed about this horrible end to my day because aside from that, yesterday was absolutely spectacular in every way, which is not something I’ve been able to say in a while. I went to Forest Park, my favorite place in all of St. Louis. It was the first time I really ventured out on my own in this city just for the sake of it rather than to get errands done. I was excited, but my anxiety was heightened. Still, I forced myself to go. I found myself briskly walking/rolling down the massive Art Hill, finally hitting the gravel with a slight twist of my ankle and exhaustion already setting in. I made my way to the gorgeous lake…pond…moat? Let’s go with moat. I made my way to the edge of the Forest Park Moat, filled with waterfalls and paddle boaters. I set my Ipod on shuffle and in that moment, I felt like I was going to be okay for the first time in a month. I felt, well, happy. I mean look at this. How could I not feel that way?

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I spent most of my time in this one lovely spot, perfectly contented. Everything felt beautiful and I felt alive. Of course that was until my everything started to hurt, because turns out, chronically ill girls don’t do so hot sitting on concrete for a few hours. I continued my walk around the remainder of the moat, passing by lovely families, a wedding in progress and a little girl very pleased with herself because she was dressed as a Pikachu. I had finished my lap and realized, much to my horror, that the hill I had walked down was also the way back up. I stared up at it, intimidated, and I felt like it was mocking me. Look at that smug grass. LOOK AT IT.

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I’ve been to this park a million times, and I knew there was another way up, but I couldn’t remember the path (thanks to chronic brain fog, of course). I’ve also been pretty convinced each visit that with all my illnesses, nerve, joint, and muscle pain, there was no way I’d be able to make it to the top. In a sudden moment of bravery or stupidity (probably both), I had a deep, gnawing feeling that I had to climb that hill. I have lost so much this year, and I’ve been defeated countless times. Now, I felt it was my turn to defeat something; and it was going to be this smug, grassy hill.

After texting my darling friend Holly, “If you don’t hear back from me in 20 minutes I’m dead,” I started my ascent. One foot in front of the other I headed upwards and it was painful and frustrating. My nerves and muscles sent out shockwaves, my bones felt like Jello. A few times I felt like stopping, but decided not to because I was afraid it would be even harder to start again. It was only when I finally reached the top that I stopped to catch my breath, and smiled like an idiot all by myself in a crowd of people in front of the museum because I beat that fucking hill.

 I thought about returning home but the day was simply too lovely, so I picked a shady bench and rested. I gazed out on the grand landscape before me. I watched a handsome man with a sweet black dog lying together in the grass. I saw a family of four with a father in a wheelchair smiling and observing just as I was. I saw Indian families, white families, black families and Muslim families. I saw couples kissing each other and leaning on one another as well as people who were alone just like me, but who didn’t seem to mind. I saw elderly people carefully walking and fresh babies wobbling about. I saw everything, and my heart felt like it was glowing; I realized that while I didn’t know how I would be okay, I knew eventually I would be.

Of course going from a day such as this to writhing in pain in my bed was deflating to say the least. In fact, when I think back to my life, most of my most wonderful days ended up in sickness, pain, passing out, or tears. After 26 years of living with as many illnesses as I have, it has made me realize that this is the curse of the chronically ill. Even the most beautiful days can often end miserably, reminding us that we’re always going to be sick and a little bit different. It’s also no fault of our own. We don’t always have a say in what our bodies do, but all of that can weigh a little heavy on the heart.

Days like these represent pretty much my experience with existence as a whole, and you know, I’m just not sure what to make of it. It’s difficult feeling like even the most magical days are stripped of their enchantment by chronic sickness. I try to remind myself that even though it’s easy to be caught up in everything wrong, the negative doesn’t always have to rip away the positive. Of course that’s easier said than done, but nevertheless, taking the goodness and holding it dear, even when experiencing hell, might not be the most ideal option, but it is the best option we’ve got.

This post took me literally all day to write because I have hardly any energy at all, yet yesterday I was daydreaming under a marble sky, feeling the sweetness of the wind and the water mist kissing my face. Yesterday felt amazing, and while I’m certainly frustrated that I can’t feel that goodness for a longer amount of time, I am at the very least learning to be okay with the fact that just as I will have more awful days, I’ll have plenty more fantastic ones too.

I have said a thousand times before and will for as long as I am able, people who are disabled, chronically ill, and in chronic pain can still have beautiful lives. We can still be alive in spite of everything that has insinuated that we don’t deserve to be as happy as the “average” person. We don’t just have to survive or just live quietly. Everyone deserves to live, experience and thrive. Even if it’s many times more difficult for those such as myself, we’re deserving of wondrous life, too.

So Eleanor take a Green Point three point, turn towards the hidden sun,
You know you are so elegant when you run.
If you run, you can run,
To that statue with the dictionary, climb to her fingernail and leap, yeah,
Take an atmospheric leap, leap and let the jet stream set you down.

Could be there when you land,
I could be there when you land,
Could be there when you land.

~Eleanor Put Your Boots On – Franz Ferdinand (This song came on yesterday while I sat at the top of Art Hill. It could not have been more perfect). 

A horse of a different color:  I am really struggling to survive right now. So, I am selling most of my things. Please consider purchasing (and convincing others) to help me pay for rent, gas, and my medical bills that are currently adding up to the height of Mt. Doom itself.

Click here to see jewelry.

Click here to see books.

Thank you for reading, from the bottom of my heart. 

 

 

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).