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.

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. 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. Coping with Dementors

Dearest readers,

I had a truly lovely and perfect weekend. Afterwards, I came home to instantly fall into a pit of depression, and those two sentences don’t quite make sense together. You see, depression is a difficult illness for approximately five billion reasons. For me, one of the most irritating is that I have found that even the best days can still end with me feeling dreadful, because (much to my frustration) there is not always correlation between my mental health and my experiences.  While everyone has off days, for many people good days lead to good moods and bad ones lead to…well…bad ones. It makes perfect sense. Depression, however, enjoys being nonsensical.

I have tried to create a system to help myself when I feel utterly hopeless. Sometimes it works and sometimes it doesn’t, but I always try to give it an honest shot. It is mostly comprised of distracting myself with things I enjoy doing, talking to my friends and resting until the Dementors (more commonly known as depression) in my brain start to move on. When all else fails, I turn to a crisis hotline. The weight of my depression last night became too much, and I felt myself slipping, so I made the decision to call.  A kind woman answered and after the initial questionnaire asked what prompted me to reach out to her. She listened through my entire soliloquy patiently.

Towards the end of the conversation we talked about how I might cope with this illness that I often feel I have no control of. This part of the conversation can sometimes be frustrating. I become annoyed because it can seem like very generic coping mechanisms are introduced to me, and though the others are trying their best, it doesn’t always help. I was surprised when the first thing she asked me was not, “what do you usually do to help yourself?” like I had experienced so many times before, but rather asked, “when was the last time your depression was this severe to the point of complete hopelessness?”

I was slightly stunned by this unexpected question. After a moment of thought, I replied that the last I remembered was two Thursdays ago, when I felt like a I was crumbling completely. She then followed with, “so it has been a little over a week since you last felt this terrible. That means that in between that time, there were parts that were far less horrible, and some that were even good.” This was truly a revelation to me. I had never thought of it this way, but she was completely right.

I admitted how wowed I was by her take on the matter, and that I had never had it presented to me in such a way before. I continued on to explain that because I also have PTSD and Anxiety Disorder on top of my depression I struggle to stay in the moment. We both agreed that since I cannot stay in the moment, I can try to look forward and back at more positive things rather than negative experiences that only worsen my mental health. If my mind demands to leave the moment, I can at least have some say in what it is going back to revisit, or what it is looking ahead towards. I can have at least a little more control. I really adored this sort of thinking, because it wasn’t about forcing me to get over it or cheer up, but instead encourages me to better navigate the current predicament.

When I hung up I started to feel that some of the monstrous weight of my depression had been alleviated. I wasn’t completely okay, but I began to feel hopeful about the fact that I had been given a new, truly effective way to handle my depression, and felt a spark of excitement as I contemplated how I would go about using them in the future.

Yesterday I described depression to the woman on the phone as if I was sitting in a house that was melting around me. It feels like there is nothing I can do to save myself or the house; I am completely stuck.  While my depression sometimes does lead to complete apathy, most of the time it comes with an array of emotions. It is comprised of impossible exhaustion, crippling sorrow, and overwhelming fear that seeps deep into me. I despise how I am during my depressive episodes and I would do anything to get avoid them. However, I must gently remind myself that  improving from any illness is a journey. I have had my depression as well as most of my illnesses the majority of my life; most of them are incurable. I may have depression for the rest of my life, and I may never be fully cured of it. But if I can learn to cope with it even at its most intense and move through it, then I have a fighting chance at life, with or without my mental illness.

Note: Since childhood I always described depression as an insidious, black, shapeless thing that takes over my mind. It only occurred to me last week that the closest thing that is similar to this is Dementors – I will probably use this imagery in my writing for the rest of forever. 

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

~Hard to Explain – The Strokes

 

 

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) 

Eleanore Vs. The Infinite, Inside Battle

 

Dearest readers,

Today the weather matches my insides. The sky has returned to its usual grey gloom, raining not enough to be beautiful but just enough to make the day feel a little bit sad. I awoke this morning sore and unrested despite oversleeping, and as I became more conscious my mind felt the fog of depression slowly creeping in. I slumped down the staircase feeling as if I had already been defeated before the day had begun.

Sometimes my depression is triggered while other times it decides to antagonize me just because it has the option. Most days I can fight back furiously, managing to quell it before it turns monstrous, while other times it starts out as a leviathan that easily takes me over. Instead of fighting I can only try my best to survive with it until it returns to the back of my mind where it waits until it decides to attack once more.

As I have expressed before, due to my many  illnesses, treating one without aggravating the others has become a complicated challenge. I have tried many medications for my anxiety and depression, yet every single one gives me either an allergic reaction or some other adverse effect that make me more unhealthy; I’m not a doctor, but I’m sure it isn’t supposed to go that way.For many of my illnesses I am left to my own devices when it comes to treatment. It is unbelievably irritating and frustrating because being sick is difficult, but being sick without much help, mental or physical, is infinitely worse.

I’ve noticed that despite becoming consistently more open in my blog, I seem to be doing the opposite in my daily life. Lately I am somewhat adverse to expressing how I truly feel to those closest to me. Part of me believes this is because I am exhausted of people not knowing what to say, minimizing me or not listening at all. This exhaustion is a mix of aggravation and fear, and it keeps me silent, or at most only expresses a small part of how I feel rather than being entirely honest. I realize how strange this is considering I seem perfectly fine with bearing my soul to the entire internet, but what can I say. I’m a little bit odd.

Though parts of this is a mystery to me, every part of my being agrees that I absolutely hate feeling this way. It is unsettling to feel as if my body is weighed down with concrete while my mind is clouded by unbearable sadness. I keep thinking to myself that I feel like this for no reason, but then remind myself that having clinical depression for my entire life is certainly a good enough reason to feel unwell some days.  All day I have felt on the verge of tears, a fragile doll just moments away from falling to pieces. No matter what I do, my depression is louder than my favorite albums, snuggling with a puppy or a warm dish of food I made for myself. My depression is blaring, heavy and as distracting as it can possibly be.

Earlier I had a short conversation with my Momma Rose who I truly adore. She asked me how I was and she could tell that something was clearly amiss, so we sat down and I explained to her just how I was feeling. Finally my tears spilled over onto my cheeks, and I felt myself beginning to come undone. Later on my friend asked me how I was, and I honestly told him, too, to which he replied that he’d do anything he could to help me through my day. It certainly helps when people who are dear to me offer their support, but despite this kindness, depression is cruel and unfair, and I honestly don’t know what I need from myself or others to improve it. I wish more than anything that I knew so that I could ask for help, but the more I try to find an answer the farther I seem to be. I feel helpless as well as irritating to those I love who are caring enough to try to support me, even when none of us are sure how to do it.

Long story short, depression really fucking sucks. I wish I could stick a vacuum in my brain to have it all sucked out of me, but unfortunately that isn’t an option. Whether I am having a good day, an alright day or an impossible day, my depression is always lingering within me. It is always a little cold spot in my heart that keeps frigid no matter how warm I am made to be. Even still, I hope that both myself and those I love never stop trying to give me the warmth I so desperately need on days like these.

Credit for the above art goes to not me (but I am unsure who did it since I used the magical google machine to find it). 

And now it’s getting dark and the sky looks sticky,
More like black treacle than tar.
Black treacle,
Somebody told the stars you’re not coming out tonight;
And so they found a place to hide.

~Arctic Monkeys – Black Treacle 

Eleanore Vs. Love, Gratitude, and an Addition to Her Life!

 

Dearest things that are called humans,

Jeez, that title is way too long, but it is accurate. Once again it is a beautiful blueberry day here in St. Louis and I am just loving it. Clearly it is a perfect day to sit with my wonderful friend Amanda in a coffee shop and write indoors. You know, where the sunshine isn’t. Allow me to flashback to last week in order to set the stage:

On Valentines’ day I had the joy of spending most of it in a dental urgent care. I sat there patiently waiting and listened to all the names being called that were not my own. “Maria,” the receptionist called. At the sound of the familiar name, the thoughts in my mind began a ballet within my head and triggered something wonderful. Maria is my grandmother’s name; and if you know me or have been a reader for some time, you know that that my grandmother is my favorite person in all of existence. Well, a few people are on that list, but she’s at the very top.

Last year I made the decision to change my name (link at the bottom that explains why). I chose Eleanore Estelle, roughly translating into the one shining star, a meaning I put together purely out of love and hope for myself to be able to triumph over every one of my struggles.  Since changing my name I have been happier than ever. Changing my name in turn changed my life for the better, which was exactly what I had hoped for. I feel like I am genuinely myself and I have continued to become more myself as I carry on through my life with my new name that I hold so dear to my heart.

All that behind said, from the start of my decision I realized that I was missing a middle name. The past year I have been ruminating almost daily about what I might make it. I thought of having no middle name at all. They’re not entirely mandatory. In fact, neither of my grandparents had middle names because in Europe at the time it simply wasn’t the fashion. Still I felt that maybe I should have one, though what I wanted it to be was little more than a giant question mark constantly floating above my head like a confused Sim.

Flash forward to the dental urgent care on Valentines’ Day, a patient that carries the same name as my darling grandmother sets me on a path of discovery. I thought to myself how lovely it would be to have my middle name honor my grandmother, a woman who for the past 30 years has been the savior, heroine, and caregiver of my siblings and I.

I pondered more, feeling a spark of something that wouldn’t quite catch. I resolved to leave the idea open in my mind’s attic for whenever I chose to revisit it, if ever. After my four hour dentist appointment, I went to see my Valentine and did my best to leave my spiraling thoughts and anxieties at rest. I drove back home later that night chasing a moonlit freeway. My brain clicked on yet again, the thoughts about my middle name dropping down from my attic into the very center of my concentration. “Marie,” I thought. “My middle name should be Marie!” I turned up my music, and I wiggled with pleasure at my decision.

My inspiration for my middle name is only half due to my desire to honor my grandmother. The rest comes from two years ago, when I had the most difficult surgery and medical experience of my life which I honestly didn’t think I’d survive. I had several amazing nurses, two especially that without I would not have been able to withstand the stress, sorrow and pain I was experiencing. One was named Angelica, a sweet, compassionate and humorous woman who was the first person I saw when I awoke from my anesthesia induced slumber. The other was all of that and somehow even more, taking the time to pay extra attention to me whenever she could, brushing my long hair every morning and every night, and after only the second day of my week long hospitalization deemed herself my “hospital mother,” showering with compassion to compensate for my lack of support during what seemed like an impossible part of my life. Her name was Marie.

Marie and my grandmother, Maria, are two of most compassionate, mighty, and fervent women I have met in my life, and to share a name with them both would be a tremendous honor. Unfortunately I cannot have either of their blessings in this decision. My grandmother has Alzheimer’s and doesn’t know that I changed my name at all, or most other things about me. I have no way to contact Marie (though I intend to try, because I want her to know all of this). Nevertheless, I sincerely hope that they would be pleased by how deeply and permanently they have impacted my life.

I hope to legally change my name as soon as possible. The only obstacle stopping me is the lack of money. Until then, I can still own my true self in as many ways possible, and I am overcome with joy that after far too long, I finally have a meaningful, powerful, and positive name that truly reflects who I am.

Eleanore Marie Estelle – that’ me you guys!

Marie, come out tonight, you could be my Valentine.

Marie, you’re center stage, you’re the soul for the new age.

I will be the leper, read me my last rite;

A crippled believer, give me sight.

~She’s a Saint, Not a Celebrity – Foxboro Hottubs 

To read about why and how I changed my name, click right here! Do it! No really, you should!

Eleanore Vs. Better Vs. Easier

Dearest humans,

Earlier today I was sitting in my car waiting for my doctor appointment underneath a gorgeously blueberry sky. Living in Missouri I deal with an abundance of gloomy weather, something I am not the slightest bit fond of. This week, much to my pleasure,the sun has decided to eviscerate our gloom.

Yesterday a dear friend posted in his blog, The Dark Side of Neverland. His life has not been an easy one and he has faced some of the most difficult obstacles a human life could present. In his last post, he wrote about his past battles that lead him to where he is now; though it seems in some way his life has improved, he is still struggling in many others. This reminded me of something that I learned a while ago through my own life that I now constantly keep in mind; life getting better and life getting easier are hardly ever synonymous. 

In my own existence this has been proved multiple times. Currently I have less than I’ve ever had in my adult life. However, as my Momma Rose likes to remind me, my life is pretty great considering what I have come from. Mentally I am far healthier than previous years and though my physical health is a constant struggle, for the time being I have Medicaid to give me some assistance. I don’t have my own home, but my adoptive mothers’ home was opened up temporarily to give me more time to figure out my own way , and that has been an enormous blessing.

The last few days my depression was starting to get the best of me. In my birth mother’s voice it tells me that I am worthless, a nothing, and a failure that will never get anywhere. It tells me I’m a burden on those I love and that people in my life are sick of me, so I shouldn’t bother to build relationships. I was feeling the heavy weight of this mental venom, until Momma Rose assured me that each goal I strive to reach is  not attained quickly. I tend to forget how hard it is to build an entire life from scratch. Turns out, it isn’t exactly easy.

Most nights I go to sleep feeling as if I have failed or that I should have done more to help myself get out of my difficult situation. I am trying to get better at reminding myself that these things take time, and that I truly am doing my best. Believing it is another story, but I hope to get there soon. It is an important lesson to learn that life getting better does not mean it gets easier, because expecting that chain reaction can lead to frustration and discouragement . Often times, life getting better means it becomes harder. There is more to accomplish, more to focus on and more at risk. Since I have anxiety disorder and PTSD, the increased risk especially terrifies me. I’ve noticed over time that my anxiety actually increases the happier I am. What kind of fucked up shit is that, brain?!

It seems that one way or another, life is never uncomplicated. However, the reasons for the complexity of life varies. I love the days that I am exhausted and busy because I am spending time with people I love, writing, and adventuring about. The days that I feel exhausted because my life is too much to handle or because I am in agony from my chronic illnesses are the worst. There is certainly a difference between content exhaustion and the kind that causes suffering. I experience a good deal of both.

Life is a strange adventure, but it is the most important we’ll ever have. It will always include struggle, difficulty and a whole lot of the unknown that we won’t always know what to do about. Where does that leave us? Well, I am not exactly sure, but if we do our best with all we have (or haven’t) been given, I think this whole life thing could turn out pretty great.

When life is going well, especially for those of us who are chronically ill,we can become paranoid about when something negative will happen to ruin it. I deal with this sort of anxiety almost daily. I suppose the best thing to do is take not just one day at a time, but one single moment at a time. Enjoy the wind, the sunshine, the love, and take all we can from it, so that even in the most difficult times we will still have goodness stored within us. Of course this is easier said than done; but I think it’s worth an honest shot.

I’d imagine the whole world was one big machine. Machines never come with any extra parts, you know. They always come with the exact amount they need. So I figured, if the entire world was one big machine, I couldn’t be an extra part. I had to be here for some reason. And that means you have to be here for some reason, too.

~Hugo

To check out my friend Jonathan’s blog, clicky clicky! It’s worth it, trust me. I’m a doctor*.

*disclaimer: I am not a doctor, not Gallifreyan or otherwise.

Eleanore Vs. Cognitive Block

Dear human thingies,

The last week or so my writing has faltered which I find distressing. There is a legitimate and frustrating  reason that I am currently struggling to do what I so adore, but that doesn’t make me any less irritated. I’m trying to balance the two by writing about the problem; after all, that’s what my blog is for, isn’t it? 

Recently I started to experience worse jaw pain than normal, and upon visiting two dentists  found that my wisdom teeth are impacted, which is causing excruciating pain in my already malformed jaw. I need to have them removed, but getting that done is tricky since I am on Medicaid and have a complex pile of health issues. What should be a fairly routine dental procedure has turned into an ordeal for me and I am left in pain, exhausted, and anxious as ever.

This past Friday I visited my counselor as per usual. What was not usual was that I ended up having a panic attack right in her office. I was feeling extremely disassociated, my mind wanting nothing to do with the rest of me, and was overcome with pain. I explained to her that I was having difficult time thinking altogether, because the pain really seemed to be stealing the show in my head. “I feel like there is a giant wall in my brain and my thoughts are trying to climb over it but just can’t,” I told her, to which she instantly replied, “You’re experiencing cognitive block.”

I’ve said before that the only thing worse than being sick is being sick and not knowing why. When my counselor was instantly able to label my current unpleasant mental state I couldn’t help but feel an odd sense of relief, which I was able to beautifully articulate to her by saying, “it’s a thing?!” Indeed, cognitive blocks are a thing. A cognitive block happens when something seems to overtake your mind, whether it is pain, grief, depression or any other intense, prolonged sensation or emotion. As my counselor explained, this is the same reason some may experience what can be known as “blind rage.”

I have never experienced blind rage; however I have experienced cognitive blocks often in my life, the perpetrator usually being depression or intense physical pain. On my worst days, whether I am suffering mentally, physically (or more often than not, experiencing it all at once), my mind is flooded and cannot function beyond the sensation of pain. Some days it feels like a wall while other days it feels as if my entire mind is filled with cement so that my thoughts cannot even attempt to move. I am mentally  paralyzed with pain, sick and unable to process anything, let alone able to help myself move towards a less dreadful mental state…and so I find myself trapped.

These blocks worsen my mental and physical pain therefore preventing me from not only doing what I love, but from doing what I must. I was incredibly disappointed in myself last week when I was told by my boss that I made a serious error at work. Thankfully my boss was forgiving, however I felt terrible because I was afraid I couldn’t truly promise her that it would not happen again. I bit my tongue and assured her I’d be extra cautious because despite my sickness I still need to make money in order to survive. The truth is though, if I am experiencing a block, no matter how careful I am, I’ll still end up doing something wrong. 

Chronic illness means that cognitive blocks are a normal part of life, but I never get used to them. I am never okay with making mistakes, being forgetful, being unable to function as I normally do or feeling forced to leave my passion behind because my mind won’t allow anything to escape it. It never gets easier to feel constantly overwhelmed by physical pain while my mental health struggles to overcompensate for a hurting body. No matter what I am thinking about at any moment, it always comes back to the fact that I am in pain, and what I want more than anything is to be able to live without it.

Unfortunately most of my illnesses I will have all my life, which means that at best I can only try to find the best ways to minimize my pain, which I am working on regularly; or at least when I have the energy to do so. Fortunately, at least for today, after making a million phone calls, far too many tears, the help of a few kind strangers and an extremely lucky cancellation, I miraculously was given a dentist appointment tomorrow to hopefully start on a path to solve my dental issues. I am both excited and terrified, but I hope that I can soon be rid of this pain so that my mind can begin to work at least a little bit better.

Tomorrow is Valentine’s day, and I wish all my darling readers a lovely day with whoever (or whatever) they adore most.  The world needs love now more than ever (including myself) so I hope every kind of love spreads like wildfire. Love each other and love yourselves kindly.  Disclaimer: It is probably a bad idea to set things on fire in the name of love. Don’t do that. 

Oh, friend of mine
Will you be mine?
Please don’t be so…
It’s OK to be terrified (terrified)
Please don’t be so shy.

~Valentine – Pentatonix

Note: The photo above is from a video game called Psychonauts, which used to be one of my favorite video games until I got older and began to become ill from 3D and first person games. To read more about my life as a sickly gamer, click here! 

The Book of Eleanore Vs. Life

Dear creatures that were once thoughts and are now beings,

Today I express to you my thoughts about thoughts (how meta)! Long ago I decided to create a a little book of Eleanore. I dug through my room and found an obnoxiously pink leather bound book, and before long it went from being a simple journal to invaluable. A year later, it contains every single hope I have along with a plethora of lists. There are lists of places I want to visit and places I have been, concerts I have been to and ones I dream to attend, my favorite songs, books, and movies. It holds quotes from those favorite things that have made a place in my heart as well as wonderful quotes from people in my life who have taken even bigger places in my heart. It also includes tiny written dates next to those items I have already accomplished. This pink, leather thinking thing has come to bring me so much joy…until I started to wonder if I was being odd.

It was only recently I realized that this practice might be seen as strange. Many people have a bucket list, whether it is tangible or only in the subspace of their minds, but my book became more, as you can tell from its description. After initially being pleased with this new little creation of mine I became a bit self conscious about it, and that feeling has persisted since.

I’d assume for most people it is easy to understand why I’d write down everything I wish to accomplish, so I find that part unnecessary to explain. The oddness lies in why I write down what I’ve already done or every quote I have heard that has caused my heart to flutter. My pondering has led me to a single answer; it all comes down to memory. My chronic illnesses, specifically Celiac Disease, PTSD, and Chronic Fatigue Syndrome (also known by its more daunting name, Myalgic Encephalomyelitis) all contribute to my mind not working quite as it should, and as I grow it troubles me more and more.

Celiac disease keeps my brain in a fog despite being gluten free for nearly ten years. Contrary to popular belief, a Celiac going gluten free solves many issues, but not all. Considering I was not diagnosed until I was 18 years old, my disease has done a good deal of damage to my body, some of which cannot be reversed. While I can remember many memories and important information, I often struggle to remember fine details. My brain is notorious for forgetting pin numbers, passwords, and usernames, as well as the placement of items. All of this information seems just out of reach in my mind yet I cannot bring it to surface. I’d be perpetually lost in Missouri if not for being able to say to my pocket robot, “Ok Google, where the fuck am I and how do I get home?”

There is also my PTSD and Chronic Fatigue Syndrome, both of which work to cause my disassociation. Together they keep me in a dreamlike state, causing me to always feel separated from my own body, on the worst days questioning if I’me even real at all. Disassociation causes constant discomfort since it makes me feel less than human and as if I cannot completely feel most things I touch. This also explains why I am particular about textures; some I get more sensation from while others I seem numb to. The numbness is a cruel reminder that my brain is not average at all. (You can read more about my disassociation here!)

Two years ago my grandmother began to suffer from the onset of Alzheimer’s. Within months it progressed and completely overtook her mind, making her forget much of her life. Witnessing her mental decline has not only made my heart ache for her, but has filled me with fear that I might end up the same. I certainly hope I do not inherit the disease from her, but every day I can’t help but think how badly I do not want to forget.

For everything in the past that I wish to hold onto and everything in the future I hope to experience, my little book of Eleanore captures it all and keeps it safe. I fight vigilantly to have a fantastic and wondrous life, and to forget the most spectacular parts would be a terrible loss. My book calms my anxieties about loss while allowing me to organize the static in my mind. It is altogether a written composition of the stardust that I am made of.

Those of us who deal with chronic illness experience life differently than those who are considered to be of average health. Therefore we must find our own ways to cope with life, to organize it and to live it as happily as we can. To the outside world we may seem peculiar, but likewise, most days the outside world seems peculiar to us. The ring I keep on my finger to help with my dissociation and my anxiety, my compulsive list making, my little book and all my other habits help me to experience life positively despite all the illness that tries to deter me.

The more I become transparent about my life with chronic illness the more I meet people who are similar to myself, and it is positively fantastic. In fact, it is one of the main reasons I write; to remind us all that we are not alone in our struggles or our peculiarities. What helps you to cope with your illnesses and help you experience life?  I hope you’ll share with me your answer in the comments below!

Do the scary thing; get scared after.

~Klaus Baudelaire – A Series of Unfortunate Events