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.

 

 

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. 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. 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. Her Static Brain

Dearest readers,

Last Wednesday my anxiety decided to surge and caused me to feel electrified in the most unpleasant way. Saturday I went to see Fantastic Beasts, which truly lived up to its name, and I was beginning to feel better until my disassociation ring  (click the blue to read about it after) exploded off my finger 30 minutes into the movie. I didn’t realize how much I’d miss it until it was gone, and now that I am without the grounding tool I had gotten used to, I am feeling so much worse.

I was hoping the weekend would improve my disposition, but Sunday I received awful news about my brother whom I no longer talk to, and my heart ached. Since then, I have felt exceedingly fragile, as if I am a porcelain doll that has already been broken and glued back together several times. My glue is weakening and I find myself in a state of grief, quickly moving from feeling  calm, to over anxious, to being reduced to a teary mess.

While I don’t wish to speak specifically of the source of my heartbreak, my grief comes from not only the bad news, but from the realization that my siblings and I have been abandoned by our parents from the very beginning. Now, all three of us struggle for different reasons, and though one of our parents is aware of our suffering, they still refuse to care or shed even a drop of empathy upon us. I grieve for everything my siblings and I never had, for the love we were not given, and for everything we must fight now in order to survive and hopefully thrive. This single thought has stuck with me the past few days, and I find myself crying constantly, my depression and anxiety at an all time high. It feels like that scene in Scott Pilgrim Vs. The World, where Scott is completely abandoned in the desert, as you can see in the featured photo.

All of this has made thinking about anything extremely difficult. Despite my heath issues I usually try to be as productive as possible, but my depression has made everything feel impossible. I’m weak and heavy, and while my thoughts normally explode in my brain like fireworks, they’re now lacking color and are mostly smoke. Depression and anxiety are both tricky monsters, and together they’re even worse. People sometimes talk about depression and how it causes feelings of overwhelming sadness or complete apathy. They talk about how it makes living a futile chore. We also talk about anxiety, our brains being constantly over stimulated with calculations and worry, and the illusion anxiety gives of a heart aching to explode out of our chests. All of these descriptions are completely true; but when you have both anxiety and depression, the symptoms are all swirled together for the perfect mental nightmare.

I always make sure that my readers know I talk from my own experiences alone, because my life is the only one I have lived. I don’t speak for every chronically ill person, every woman, or every person who struggles with mental illness. Of course, it is always my hope that my words are relatable; nothing pleases me more than when I get a comment from someone being told that they feel like I “get it.” After all, what’s a better feeling than knowing that you are understood?

That being said, to me having anxiety and depression at once feels someone keeps abusing my light switch. They turn my switch upwards and everything launches into action at once; my anxiety goes into warp speed, my worries and fears storm my mind, the pain in my muscles, nerves and joints surge. Suddenly I’m shut off, and while the anxiety and pain is still there, it is blanketed by exhaustion and heaviness. I still feel fear, but rather than being overcome with worry I think, “who cares?” as I struggle to stay awake and find a reason to keep going through my day. Just when I think that at least feeling heavy and tired is better than feeling like I’m bursting at the seams, my switch is flipped again, and my brain is once again filled with static.

Living this way is miserable, and of course when I talk to most people about it, their first reaction is, “you need medication!” Nothing aggravates me more than this suggestion. While medications are certainly useful, they aren’t magical cures to a problem. They’re supplementary, meant to be only part of a whole treatment. They also usually forget that I have tried to take both anxiety medications and depression medications, and every single time, I’m left with either a severe allergic reaction or worsened anxiety and depression to the point where I’m manic. Some have even made me hallucinate which is anything but helpful.

I have all this suffering and pain, all this illness while living in a city that is not my own and I have no medication I am able to take. My doctors and psychiatrists are now too afraid to give me anything else for fear I’ll either go insane or anaphylactic. Once again I feel abandoned, carrying the weight of a thousand lives rather than just my own. As I’ve said before, many days it feels like it’s all just too much for one girl to carry, especially since I have many other illnesses besides these two.

I feel paralyzed by everything going on in my body and mind, yet I still have to function.  I still have to go to work at my current job and start my new part time job tomorrow, all while pretending nothing is wrong. I still have to cook and keep my home tidy, do all kinds of paperwork and keep my life running. Though I have rested the last few days, I don’t feel any better at all. Sleep isn’t even enough at this point, and this morning when I talked to my social worker on the phone, I had nothing to say aside for “I don’t know,” when she asked what she could do to help me.

I feel sick, heartbroken, defeated and lost, yet at the same time I feel as if I don’t have any time to feel it. I haven’t even had time to grieve the death of my grandfather in April or the end of my two and a half year relationship in September because I’m just struggling to survive. I believe that not being given the ability to properly cope only adds to more sickness, and I can feel it all bearing down on me. The worst part of all this is two weeks ago a few major changes happened that made me absolutely ecstatic; I felt less sick, amazingly happy and excited for my life. I wish it had lasted longer, but it never takes long for life to grab me from a high point and drag me back down.

Each night I go to bed, regardless of how the day was, I tell myself, “I hope tomorrow is better.” Sometimes it is and sometimes it isn’t, but my hope always remains.  I’ve only been awake today for two hours, but I can already tell today is going to be rough, so I will say it now rather than waiting for my bedtime- I hope, as I always do, that tomorrow is so much better.

These silent hearts we hold within our hands,
Within my heart, the rush is just the same.
These silent hearts, protect it from the dark.
And let silence be broken.

These Silent Hearts – BT

Eleanore Vs. A Little More Anxiety!

TW: bugs! 

Dear darling deers (I just watched The Lion, The Witch and The Wardrobe so my mind is foresty), 

Last week I pushed myself farther than I probably should have and as a result I ended up suffering for it; but that’s how this whole chronically ill thing tends to go.  As I have said before in a post a little ways back, one of the most frustrating things about being chronically ill is not knowing if you’re simply sick from everything you already have, or if your symptoms are something to be worried about. This time, I’m quite sure I’m just unbearably tired. 

On Saturday which was the last day of my super busy week, after only 5 hours of sleep and 9 long hours at work, I returned home and all I could think about was rest. My bed had become a long lost lover that my heart had been aching for all week. We were constantly reunited, then ripped away from one another too soon. Okay..maybe I’m being dramatic. But really, I was as my grandmother often says, kaput!

I waddled from one room to another, took a warm shower and contemplated falling asleep in it, and turned on my tea kettle to make hot water for the water bottle I put on my incessantly aching back. I went to my bedroom to lay on the bed and wait for the horror-like screaming of my tea kettle. I lay there staring at the ceiling, fighting sleep in any way I could so that the stove wouldn’t burn down my home. As my eyes wandered about my bedroom I finally saw it; a giant, grey,  spindly moustache sitting on my wall.

If you’re wondering what a spindly moustache was doing on my wall, allow me to explain. Here in Missouri we have creatures called house centipedes, and they horrify me because I come from the magical land of California where we had our fair share of bugs…but we did not have big, grey centipedes. I glared up at it and thought how nothing, not even this creepy little fucker, would keep me from the sleep I so desperately needed. I grabbed a ball of paper towels and stepped up on the bed to reach it. I could kill the bug. I was a big girl or something like that! I own tablecloths! 

Several times I moved my hand to reach up and destroy it, but each time its freakish feelers would slowly move, and it felt as if they were grazing my skin. I imagined the bug jumping on me, feeling the texture of it. My imagination betrayed me and I began to feel more and more uncomfortable. My anxiety built up and I become nervous. “But it’s only a bug!” I kept telling myself. “A harmless, stupid little bug!” Still, I could not manage to kill it.

I am extremely fortunate that my landlord is not only a kind person, but has become my good friend. I’ve called him several times to rescue me from wasps, and though house centipedes are mostly harmless (at least that’s what they want me to think), he is aware that I suffer from anxiety and have a moderate fear of bugs. Even butterflies and fireflies give me the creeps most of the time. Since I heard him walking around outside, I called him asking to remove the spindly moustache from my home because I was completely exhausted. He agreed to come up and I told him he was my hero; after at all, I do often feel like a princess in a tower surrounded by bugs.

My landlord came up and the spindly moustache was sitting at the corner of the doorway. My landlord took the fly swatter he had given to me a few months ago and whacked it. Of course this was the exact opposite of what I was hoping would happen. To my horror, the centipede fell into my bed and ran off.  Seeing the bug in my bed sent me into a panic. I asked him to try to help me find it, but he had to leave. I felt my tears rising in my eyes while my anxiety rose in my chest. I told myself how immature it was to feel so terrified by a harmless insect and I hated myself for getting so upset. I felt the judgment of my friend and landlord, and was embarrassed to have him see me so anxious over such a ridiculously minor problem. The sleep deprivation was not helping. 

After I composed myself (sort of kind of) I changed my bedsheets and shook out my blankets to make absolutely sure the bug was nowhere to be found. Finally I felt safe to sleep, yet every time I relaxed I would feel the sensation of something crawling on me, and it made truly resting exceedingly difficult. I had planned to sleep for at least two hours; instead, I slept for only 30 minutes.  I woke from my nap hardly feeling rested, but I finally gave up and decided try to make some dinner instead.

I am aware that my reactions to certain situations do not make sense to those around me. Some of the circumstances that make me extremely nervous like insects, going to a gas station, or being in a crowded shop are only minor inconveniences to others. It can also be confusing that sometimes I am not as bothered by these situations while other times they cause me a great deal of stress. I’ve been called childish, immature, drama queen, attention whore, and every other sideways insult that others can think of in these situations. I’ve been told that I “just need to relax,” that it’s “not that big of a deal,” and that “everything is fine.” Of course, none of these phrases help. Ever.

The mechanisms of anxiety are extremely complex and though I have lived with it all my life, at times I still don’t completely comprehend it all. I don’t entirely understand why some days I feel like being in a crowd may make me burst, while other times I’m only made to feel mildly nervous. If anything I assume that external factors such as the remainder of my illnesses, my amount of stress and how much sleep I get aggravates my anxiety to make it more or less tolerable. As much as I try, I cannot always help these factors, and so I end up in tears because a spindly moustache has fallen into my bed. Truthfully, this wasn’t only about the bug. My tears were a manifestation of every negative thing I was feeling at that moment in time, and the centipede was the gross little cherry atop my clusterfuck sundae.

Having anxiety causes me embarrassment, and that feeling of embarrassment makes feel worse both mentally and physically. It tells my self deprecation, “hey! come play with my brain, I didn’t need to think straight today anyway!’ It’s exhausting to constantly have to apologize for myself, to see people roll their eyes at me or get angry with me, even exasperated at times. I wish they could understand that I’m just as frustrated as they are, if not more so. It gets tiresome to replay every situation in my head a thousand times, thinking about all the dreadful impressions I’ve given the people around me. 

I am well aware that my anxiety affects others around me; but the fact remains that it affects me the most, and while I definitely I try to understand that it isn’t always easy to deal with, I hope that people understand that I’m not doing these frustrating things on purpose. I wish I could be calm and collected, the kind of person who can do martial arts and rescue people from supernatural dangers and maybe even kill her own bugs. I am not that person, at least for now. While I’m trying to make who I am better and healthier, it is an extremely long process.

Currently, I am the girl who is terrified of bugs and who gets anxious regardless of how I try not to. I am a silly girl that cries easily, sometimes from anxiety, sometimes from sadness and sometimes from happiness, or a sweet end to a film. I’m the person who is going to need help on occasion, both mentally and physically, even though I desperately wish that I didn’t. I need to be told a thousand times a day that I’m safe because anxiety and physical illness often causes me to forget or doubt it. I need to be constantly told that I am supported, and that as frustrating as I can sometimes be, I’m still loved anyway. 

To my friends that have to deal with me at my best and worst moments, I hope you understand that I truly am trying my best at all times, it just doesn’t always work. I understand that you’re doing the same, and I’m so thankful for those that have helped me through especially some of the worst parts of my life and who have seen me at my least composed. It would be significantly more difficult to be myself if not for those who love me through the trials of my life. 

Anxiety is a sneaky, hidden illness. Other times, the bastard is painfully obvious and impossible to stow away. Either way, though it may not seem like it, it is always with me, resting beneath my skin like a monster waiting for someone to dare to enter its cave. I’m doing everything I can to gain control of it, and I am confident that between time and my hard work, I will. For now, I’m hoping that if I understand that those I love are unaccustomed to how my mind functions, and they understand that I’m constantly fighting battles that I win yet also lose, I truly believe that we can get through anything; even an uprising of spindly Missouri moustaches. Moustachi? Meestach? Plurals are hard (As you can see by my silliness, I’m not quite over my exhaustion just yet. Back to bed I go).

A downward spiral just a pirouette, Getting worse til there’s nothing left.
What good comes of something when I’m just the ghost of nothing?
I’m just the man on the balcony singing, “Nobody will ever remember me, ”
Rejoice, rejoice and fall to your knees.
Lunatic of a god or a god of a lunatic?
Oh, their faces are dancing, they’re dancing til
Til they can’t stand it.
A composer but never composed,
Singing the symphonies of the overdosed.

~ From Now On We Are Enemies – Fall Out Boy

Eleanore and the Magic Ring Vs. Everything

Dear dancing phalanges (if you don’t understand that reference, click here, you’ll be glad you did),

After much struggle, I finally found a counselor to help me and I am so thankful for her. We have been working on my mental health and though it has only been a month I am already feeling small differences. My counselor, Erin, is smart and compassionate, exactly what a counselor should be. Surprisingly, she’s a psychology student, but despite her still being in school she’s better than most of the counselors I’ve ever had. I am fortunate she was assigned to me.

During my last few appointments we have been discussing one of the problems I have that I really hate talking about, for fear that people will think I’m either crazy or lying. Or both. After speaking with her and realizing that this is surprisingly not just me, I’ve decided to come out about it, so it’s super transparent Eleanore time. Aside from having PTSD, Anxiety Disorder and depression, I have struggled with disassociation for as long as I can remember. I understand that this makes very little sense. Allow me to remedy that.

There is a disorder called Dissociative Identity Disorder, known more commonly as multiple personality disorder. This is not the illness I suffer from. What I do suffer from is dissociation between my soul and my body; at least, that’s the easiest way to explain it. It makes me feel as if my soul and body are separated, my soul happily floating in the atmosphere while my body hops about the Earth. When I was younger, I used to imagine my soul swimming about the galaxies, an airy and carefree version of myself tethered to me by only a thin string of stars. I explained this to a few people, all of which thought I was being imaginative at best and strange at worst. So, I stopped talking about it while continuing to living feeling as if I was not a whole person.

My dissociation also affects my senses. When I touch certain items it seems as if I can’t completely feel them. I’m only feeling 50% of what is really there. Extremely smooth materials such as tiles, satin, and leather bother me because not only do their textures make me uncomfortable, but it also seems I can’t get much sensation from them. Things that are textured such as stone, carpets, and beardy faces, however, are my favorite things because since they are a bit more rough, I can sense them more. If you have a beard, beware, because I will try to touch it. I’ll ask permission first of course, I’m not a weirdo, but I will work to be as convincing as possible that I should be allowed to do so. #sorrynotsorry.

When I was first diagnosed with Celiac Disease I struggled with numbness and tingling in my hands. I had found out that nerve damage was often associated with Celiac Disease and was worried that my hands would go numb forever. However, as I received more care the numbness improved, and while my hands still shake and hurt many days, I’ve never been diagnosed with any nerve issues in my hands. While this was somewhat of a relief, it also made me frustrated as I could not figure out while I often felt like I couldn’t sense half the world.

Several counselors I have had before would mention disassociation here and there, but would never think much of it. Until I saw Erin, it became a fact of my life. I was doomed to feel disconnected from my soul, from my world, unable to feel all that I wanted to. Somedays it is worse and some days it is better, but it never fully goes away, and with my attitude, it never would. As I became more comfortable with Erin we began to dissect my disassociation, and to my relief she helped me to discover that this problem is actually symptomatic of PTSD. She explained that it was as if my whole being was attempting to protect me from experiencing more pain than I’ve already had to deal with. This made everything worse because my lack of senses depresses me, which in turn makes my disassociation worse, which makes me more numb. After we contemplated my situation she gave me the idea to find something I can keep on me that is a texture I enjoy, so that when needed I can touch it and bring back my feeling.

Since finding a cute, beardy hipster guy to follow me around forever might be a little weird, I thought for quite a while what I would ideally have on me, and I settled on a ring. I’ve always liked rings, and it would be something easily carried while remaining inconspicuous. The material that popped into my mind was Marcasite, a type of pyrite stone. When my siblings and I were younglings, all three of us had rock collections. My sister had a beautiful, dark piece of pyrite that I was always quite jealous of. Thinking about it now, I liked it so much because of its texture; rough enough to allow me to feel while not being painful or uncomfortable. Marcasite is used to make jewelry that often looks like this:

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It’s the perfect texture and I would get a ring such as this but the whole being poor as balls things means that I can’t afford a damn thing. I felt particularly frustrated until I realized that I had an entire box of beads and everything I needed to make a ring myself. So, I broke out the beads and made my disassociation ring. It looks like this.

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I’ve ended up absolutely loving it. As soon as I put it on my finger, I began to play with it, and I have been doing so ever since. While I hope that I can get a marcasite one eventually, for now, the little black beads hanging out on my finger are a lovely start. It’s comforting for my anxiety and my dissociation, and while this is a very tiny step thanks to a very tiny ring, I’m hoping that it’s the first of many on my way to being healthier mentally and physically. The idea that my dissociation is something that can be treated and helped gives me so much hope. While I wish I could eventually knock off every single illness on my list, I realize that’s not entirely possible; but if I can remedy just a few and refrain from getting any others I’ll be more than satisfied.

Here’s to all of us being on the way up, and as always, a step closer to living the best versions of our lives despite that which deters us.

You have become what you have always been,
Life, figuring out, peripheral vision
No words we can speak, our paths have been chosen.
But all the trails that we trek, should lead us back to here.
Because our love comes again,
Just when I’ve broken down I found love can come again.
You gotta believe that love comes again,
Just when I’ve broken downI found love can come again.

 

 

 

 

Eleanore Vs. The Librarian

Dear readers (or people whose eyes just happened to be scanning the words I’ve written),

A few months ago my friend and I went to a wonderful old fashioned bookstore here in St. Louis. Instantly I was swallowed by the towering shelves. My eyes traveled from book spine to book spine while I delightfully ran my fingers along them all.  I made my way from one section to another until finally reaching the front of the store, a maze of short shelves made for young little humans. I walked down these aisles as well, until I came upon the cover of one particular book, which upon seeing my brain set off a downpour of memories.

I was oddly overcome with emotion. The cover of note is the one seen above – it belongs to Avi’s Midnight Magic. Now keep in mind I couldn’t remember at all what this book was about. All I remember was my experience with it, and that wonderful cover. My darling readers, get your Deloreans fixed; we’re going back to the…well…past (not as catchy, I know).

Long, long ago, in a far off land called California, a small, chubby Eleanore was booping about her elementary school library. The shelves were tiny for tiny hands to reach, all with colorful labels adorning the spines. Each color meant the books were appropriate for a certain age. I, a mediocre third grader, was only allowed to read green labeled books. This was problematic for my little mind because the fact was, most of the green label books were, for lack of more energy because I’m still suffering through a relapse, boring as shit.

I had to choose a book soon. The teacher was growing impatient. Finally a cover caught my eye-Midnight Magic. It looked mysterious and had the word magic on the cover, and the fact that the author didn’t have a last name only increased my curiousity. It was my chosen one for the week. Pleased with myself, I made my way to the counter.

I stood in line with other small humans until it was my turn. I presented my book. The librarian took the card out, looked at me, but did not stamp it. Instead, she stared at me for a moment before finally speaking. The following conversation then transpired.

Librarian: You can’t check this out. It is far above your grade and you can’t read it.

Tinenore (tiny Eleanore): But I can read it.

Librarian: No, you can’t.

Tinenore: Yes, I can. 

Librarian: Okay, how about this. if you can read the entire first page right now, I’ll let you check it out. If you don’t, you have to put it back and get one for your grade.

I side glanced at the other children waiting behind me, annoyed that I was taking so long. I looked at the librarian, who seemed like a level one monster to me at the moment. Not because of her looks mind you. I can’t remember what she looked like at all. I just remember how her tone and her words made me feel, and it felt like I was staring down a level one monster. A threatening potted plant, if you will. However, being the stubborn, frizzy little chubster I was, I went for it. I began to read in front of everyone, including the librarian.

And then I read every single word, flawlessly.  Suck it, librarian from nearly 20 years ago!!

She reluctantly stamped the book card and handed the book to me. I felt like a conquerer..of the third grade.This situation was firmly implanted in my head and as you can see, it still is. I was so affected by her doubt and her pressuring me to instantly prove myself in front of a bunch of other kids who could have truly not cared any less. I remember the feeling of empowerment when, despite my nervousness, my facial maloclussion and my speech impediment, I read. I read friggin hard. 

I am not a librarian. I’m just a silly sick girl writing a blog that I am hoping with all my heart helps people and makes them think. Whether it be at my age now or my age then, I can’t seem to comprehend why the librarian reacted so harshly. I suppose the only explanation I can think of is that they didn’t want us to check out books that were too difficult for fear of it discouraging us from reading. But forcing us to read books that weren’t challenging in the slightest was also discouraging, and for a while I was convinced reading was boring. It wasn’t until middle school that I began to realize it was not that reading as a whole wasn’t my cup of tea, but that I had to genuinely be interested in a book to read through it. My lack of intelligence was never a problem; it was my lack of passion that held me back.

I carried this problem throughout high school and college. I was forced to read so many books that I found incorrigible. I was thankful to my junior year English teacher whose “required reading” list included Stephen King books. If it hadn’t, I don’t think I would have graduated, as most of the time I’d spend my free hours reading books I bought on weekends rather than the ones I had tests on. Thankfully, Spark Notes helped me choke down books like Moby Dick and The Scarlett Letter.  When I was in college my reading got significantly more interesting, so I survived thanks to Greek Mythology (utter drama queens), an English class based on graphic novels, and books like The Curious Incident of the Dog in The Night Time. Thank Glob for teachers who chose interesting books.

There have been countless times in my life that I have had to prove myself, often on the spot. It seems it’s extremely rare that I am able to do it as well as I did back then. Normally I become anxious and tongue-tied, or just fail altogether. Sometimes I don’t think the current me is as brave as the tiny version of me was. But then again, maybe tiny Eleanore was instead not more brave, but simply the catalyst that has gotten me through my complex and often foreboding life events where I have had to time and time again stare some sort of monster in the face. Whether it be a disapproving librarian or a painful illness, even if I may not always do it with ease or grace, I still do it. I still carry on, and ultimately get through the battle. While the battles of my recent years have been significantly more tumultuous than my battle to read Midnight Magic, this memory is a reminder that I have power in me that I’m not always certain of.

Was this face off with my elementary librarian a pivotal point in the challenging adventure that is my life? Or was it simply a minor childhood experience that I’ve literally read way too much into?

Considering who I am, it’s most likely both.

“Squinting into the gloom, he saw Count Scarazoni entering the chapel. With his long, lean face and pointed beard, he looked like the Devil himself.”

~Midnight Magic (I mean, obviously)

 

 

Eleanore Vs. Fear Itself

TW: fear, death

Dear citizens of Halloween town,

The last few weeks have tested me. I think so far I’m getting a C on the test, but that’s probably because I’ve never been great at studying.

A few weeks ago I was talking my dearest friend Stan. We’ve known each other for exactly half my life, and in those thirteen years we have strongly influenced each other. I would be such a drastically different person if not for growing up with him. Our friendship has been one of the only consistently trustworthy things I’ve had in my life. To say I’m fortunate to have grown up with such a fantastic human being is an understatement; but I digress…because I could rant about how amazing he is for basically forever.  My point is, due to our closeness, he knows me better than anyone else. He can read my mind and can tell me what I need to hear. He can also tell me what I sometimes don’t want to hear, but need to hear for my own benefit.

As we talked I told him that  I never had so much anxiety about getting more sick or dying as I do this year. I’ve always had a fear of dying young, but this year more than ever, the fear has been constricting me every second and it weighs on my heart like a thousand tons of cement. It’s not easy to carry it around with me, especially considering I’ve had more than a few close calls that repeat in my mind. As I’ve said countless times before, my ultimate goal is to live a healthy, long and happy life. Especially at my work I see people every day who alter bodies in order to make others think they haven’t made it to an older age; but as someone who is young and has had to face the prospect of having my life cut short, growing old is all I’ve ever wanted.

I’ve explained this to a few select people and of course not many know what to say. At best I’m given sympathy, and at worst  I’m given shrugs and thick silence. While it is understandable this isn’t exactly a brunch table topic, I feel it is something those with chronic illness have to face; the uncertainty of the future and whether or not we’ll still be here for it.

As I spoke a little faster and more clumsily because my anxiety was beginning to knot my words into a frenzy, fear came pouring out of me. My eyes filled with tears and my stomach tightened as I released my darkest fear to the person who knows me best. After the emotional storm, he told me one simple sentence that had never, ever been spoken to me: “you don’t have the obligation to be scared.”

At fist this might not sound so fantastic. However he continued on to explain to me that those of us with chronic illness (including him by the way), feel that it is our obligation to be fearful. If we’re always scared, it feels like we’re doing everything that we can to prevent the worst from happening to us. It makes us feel responsible and like we can in some way save ourselves. Yet even with all the fear I’ve collected throughout my chronically ill life and all that I’ve done to prevent bad things from happening to me, they still have. They still have. 

Stan explained that if I were to strive for a calmness and acceptance that I’m doing everything I can already, and that maybe there isn’t more to be done, that I might be capable of releasing myself from my anxiety and constant fear. Especially because I was raised by a fear monger, it was pumped into me from the start of my existence that I must always, always fear. I must fear the known and unknown and everything in between, including my heath. Growing up, I thought this was all normal. As I grow older and discover life through my own eyes rather than the pair I was forced to look through, I’m finding that many of my lessons are being proven wrong.

A few weeks ago I wrote this post  (click the blue to read after!) in regards to the fact that it is difficult to deal with chronic pain because at a certain point the line between an emergency and your normal state of sickness is convoluted. The fogginess leads us to be fearful all the time, non-stop, because we’re never entirely sure what’s happening to us. While Stan’s epiphany has caused me a great deal of introspection, I still feel the same way. After all, I can’t change 26 years worth of fearing in three weeks.

While it makes us all very uncomfortable, the fact is that no matter how scared I am, no matter how I try to prevent negative experiences, they’re still going to happen. I can’t express enough how much I fucking despise the feeling of losing consciousness during one of my Vasovagal episodes. The truth is, regardless of how much I hate these episodes, while I do everything I can to promote my own wellness, they’re still going to happen sometimes, because there is a good deal that I’m just simply not in control of.

I’ve mentioned before that I’ve started to do Yoga on my better days and physically it is a terrific help. It’s also been somewhat helpful for my mental health too. In particular, I’ve become extremely fond of one mantra that I hear often during my practice. “I let go of that which I cannot control.” Ever so slowly, I’m learning the importance of this, especially in regards to my health. I must let go what I cannot control.

Of course this doesn’t mean one should not take any responsibility for themselves. If you’re a Celiac who doesn’t care about what they eat and then complain about your symptoms, I cannot have sympathy for you (and I am a Celiac). Those who are chronically ill have a responsibility to themselves to advocate as best they can. When you truly have done everything possible to be the best version of yourself despite your illnesses, you have a little less to fear, because you’re making the “things to be afraid of” list shrink a bit. It would be nice to obliterate it entirely, but I think even for the healthiest people, at certain points, being a human is a little bit frightening to do. Even more so when you put all your passion into it.

I’m not going to say everyone should stop being afraid. I’m not going to lie and say I’m magically cured of all my fear either, because I’d be lying through my maloclussed teeth. I will say that I believe that the stress that comes from the constant fear is sickening and aggravates every single one of my diagnoses, and I think that goes for most people.

Chronically ill people are constantly suffocated under stereotypes of what we should be like, and while that’s a horse of a different color and a post for another time, I will say that these stereotypes are unnecessary pressure placed upon us. To cut my rant short, there is no correct way to be chronically ill, regardless of what society tells us.

Though we are constantly hurting, end up in hospitals more than any person should, and even  when our entire futures are unclear because we have no idea how we’ll function, fear does not have to be so tightly wound around our throats, choking out the remaining joy we have. Fear is not the only option. While I’m not totally sure how to make it less dominant in my life, I do know that I am going to start making calmness and relaxation more of a priority in my life, as well as working on acceptance of what I cannot control. Sounds like a piece of cake…right?

The only thing to fear is fear itself. But holy crap…fear is terrifying.

Quit crying your eyes out,

Quit crying your eyes out, and baby c’mon,

isn’t there something familiar about me?

The past is only the future with the lights on.

~Baby C’mon- +44