Posts Tagged ‘worries’

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Writing it out and calling bs on monsters

June 1, 2016

The thing about my anxiety is, it creeps. It slithers up my ankles, itching the backs of my knees, creates knots in my back and tangles in my tummy, it makes my fingertips tingle, my temples throb, and my brain spin. And then it reaches around into my ear and laughs. It laughs because i sit there helplessly wondering what just happened to start this whole thing and sometimes i just don’t know. Or it laughs because sometimes it decides to burrow and make itself at home for days at a time while every noise makes me jump and while other’s people’s comments send me reeling. i worry about everything i say or do during those days, terrified to feel the creeping.

 

i can feel it in my shoulder blades right now. Tightening muscles as it moves. Brain in full spin. And, sure, i can name little things that may have started the whole thing but i don’t know what started the ready to disappear, want to curl up, crying hysterically, ready to be done with this shit anxiety.

 

Maybe it’s the fact that every time i have to talk about my family. . . the real ones, not the chosen. i feel sick. And that makes me feel like a failure because they are supposed to be out of my life but clearly they still have such power over me. Power i’m not sure how to take back. Because it’s one thing to physically walk away and it’s another to get that out of your head. And i feel like even more of a failure because i suck at talking in the first place. then throw in feeling physically ill and like i’ve fucked up because i can’t get these people out of my head or take back the power they have over me. And i’m ready to just shut down completely. i have yet to win in that situation which makes me dread it. And that makes it this vicious cycle that i can’t seem to get out of.

 

Maybe it’s just a matter of repetition and seeing that i can get through these conversations. And with each conversation comes more power back in my hands. i don’t know if that’s how it works. Maybe it could? Maybe it could lead to days and weeks of feeling like shit and wondering if i’ll ever breathe normally again. Maybe both?

 

So i sit here trying to write out my thoughts as my head spins, and my leg shakes, and i feel nauseous, and i want to be doing other things. Because that’s always the answer, write it out. i wish it were really that easy. i wish i didn’t have to sit here time and time again with tears streaming down my face forcing myself to get my thoughts out in words rather than other ways. i wish i didn’t have to have other people pushing me to do so instead of myself too.

 

But i guess that’s what life is, sometimes you’re the one pushing yourself and sometimes you’re the one being pushed by someone else and i have to keep learning that there is nothing wrong with that. It’s okay to need help. It’s okay to get that push from someone else when i can’t give it to myself. i just need to be able to listen past the drone of the anxiety and the depression monsters and hear the reality of the situation. And that’s not always easy.

 

Monsters like to pull you down and keep you isolated. That failure feeling is like food for them, they just keep coming back for more and more. And they just get louder and louder every single time. Writing it out, i guess, is my way of breaking that isolation. Of calling bullshit on monsters. i just need a reminder to do so sometimes. i need some help to do that calling out.

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More than just a necklace

May 25, 2016

Today i found one of my most prized possessions, a necklace made for me by one of my most favorite people that i thought had fallen between the cracks of some furniture but was just tangled in with some other jewelry. On it hangs a single spoon and the words “Just Breathe”. The two of us both have invisible illnesses and have shared many conversations about the frustrations that come along with them. One day i came across the Spoon Theory and shared it and then for my birthday i got this amazing necklace that she made just for me.

 

i cried a lot when i found my necklace today because it means so much to me but also because lately i haven’t had many spoons in my hands to go through my days with but today i found one more and that gave me more strength than i can explain.

 

The Spoon Theory

by Christine Miserandino http://www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

Cartoon image of Christine Miserandino holding a spoon
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino

– See more at: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/#sthash.Zs8guYq2.dpuf

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People don’t completely suck and some of them are pretty amazing.

August 20, 2014

i have been reminded today that as much doubt, emptiness, fear, anger, and whatever else i’m feeling right now, depression really does lie.

 

i was reminded that some gifts are non-returnable. So even if connections with people are broken and severed, the lessons i learned and the challenges i overcame because of those people can never be taken away from me. It might be hard for me to realize the integrity of those gifts may not have been as pure as i had thought but they’re mine now nonetheless. 

 

i still want to find a cave right now. But at least i know i have some really good stuff waiting when i come out. 

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We’re all mad here, just not necessarily at the right people

August 19, 2014

There are things in the world right now that i want to be angry with. People i want to be angry at. But the depression monster likes to lie. So instead i’m just angry at myself right now. 

 

i’m angry because people tell me i need to not be so hard on myself right now and i can’t seem to even do that when i need to most of all. i’m angry because i just want to push everyone away and be alone. And because i don’t want to be alone either but i can’t figure out what i do want. i’m so mad because i have some of the most incredible people in my life and i don’t know how to handle that right now because i don’t think i’ve ever had so much support, sad and mad because it took this long to find that support.  i’m pissy because my knee hurts right now and because i didn’t go to physical therapy today. 

 

A lot of that is just surface stuff. i can’t seem to stop there. i can feel rage and a barrage of questions, why couldn’t i be the daughter/friend/girlfriend/person  X wanted? Why did i have to fuck everything up all over again? Why can’t i just shut up right now? When will i ever not think about picking up a razor blade to fix things? 

 

i’m trying to step out of my head and tell myself that every moment that i am here, writing, being, whatevering is something for me to not be angry about. But anger is something i need help with. i wasn’t allowed to express anger growing up so it all turned inward. i know that. So now i still have problems figuring out how to express anger and direct it places other than at me. And i am angry at the depression monster but depression is part of me so i just get stuck in a limbo. 

 

When someone does something to make me mad, i turn it around that i shouldn’t have trusted/connected/believed/etc. i should have known better. What is the use at being angry at that person because i can’t change that person- i can try to change me so i should be mad at me. But being mad at myself isn’t productive. It doesn’t get me anywhere except further info the vortex of negative voices in my head. So where do i put these emotions? How do they work? And can i retrain myself to figure this out? i really don’t like me right now- i don’t want to be around me right now so how do i reconcile all that anger i have toward myself and trying to keep holding onto the desire to wade through all this shittiness and come out stronger for next time? 

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Surrounded by way too many people but still way too alone

August 18, 2014

Questions and doubts are the only things that seem to be playing in my head. Trying to remind myself that this is just all part of the game the monster likes to play with me and then questioning whether i believe that or not. Wondering if it is actually worth making connections with people when i know i will never be good enough for what they deserve. And wondering if, in standing up for what i believe if i feel better standing alone right now or not. 

 

i don’t want to see people. Because i don’t want to have to pretend to be whatever i’m not right now. And we say it’s okay to not do that. We say we can be honest with people. And maybe that’s true, behind the closed doors of your home with a close friend. Or whispered with one person who you might be able to trust but you aren’t sure because trust is kind of for suckers anyway. i can’t be how i am right now around people without every wrong question being asked, look being given, hearing every sigh or seeing every eye rolling. And maybe even if that wasn’t the case i wouldn’t want to see people. i don’t know. Right now i feel broken. Not “unfixable” but kind of like a chain that falls off on a bike sometimes. i don’t want to be around people when i’m broken. 

 

The questions roll on and on and on, is it really that i don’t want to be around people or do i doubt that people want to be around me? Am i scared of what they will think of me when they see me broken?  How do people muster up the energy to speak to other people? Why can’t i just fake it for days and weeks anymore? Was that really better? Why can’t i have brain chemistry that works? Why is it so wrong to want to relieve all the pressure? What would people think if they knew how many hypothetical questions i asked and then googled? Should i be worried about those questions? Do i even deserve to be asking those questions? Why can’t someone who cares more than i do right now be doing this? 

 

i want to say this writing thing is worthless but i know it isn’t. i know it helps me. i know it is something solid for me to grasp when nothing else seems graspable. But right now, at this moment, it feels worthless. It feels like something no one cares about, something i do because someone else suggested it was a better thing to do than my other coping mechanisms. It feels like words that i am standing at the top of a cliff screaming and no one is hearing. And it isn’t a matter of page views or comments or anything like that. It’s just a matter of writing these stream of consciousness things and then still feeling like i’m standing alone at the top of the cliff. There’s no immediate relief. The monster can burrow into every crevice so quickly but needs all the time in the world to find its way out.

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Click clack me, thoughts i type.

March 13, 2013

The very first thing i wanted to be when i grew up was a garbage collector. i wanted to work really hard and become the garbage collector on Sesame Street so i could meet Oscar. Once i realized that becoming a garbage collector was not going to get me in with Oscar or Cookie Monster or Grover i moved onto the next career choice. And that was writing.

 

i went to my first writer’s work shop when i was in first grade. It was at a local college and had kids my age through high school. We all attended the same opening and closing sessions but then we broke down into groups with kids our own age to workshop the writing we brought with us. i worked so hard on my story, it was kind of a strange cross between Back to the Future and Super Mario Brothers with a normal kid dream sequence thing. i wrote it out and then typed it carefully. i edited it and had my teacher edit it and then printed out multiple copies to share and put them in the special folder i had been given when i was given the news that i had been invited to the conference.

writersworkshop

 

(this is me editing my story and talking to my grandma on the phone)

When we broke down into our small groups everyone passed around a copy of their story and i started hearing whispers. i looked at everyone else’s story photocopied from that paper you learn to write on with the dotted lines in the middle to show you where the upper and lower case letters go. They were two or three pages long. Then i looked at my story, three pages typed. Everyone thought i was a huge weirdo and when it was my turn to workshop most of the time was spent discussing who typed it or how long it took to write or other silly logistical things instead of the story itself. There was a brief moment when i was upset by all of this. And then i let myself be wrapped up in the day again, i was surrounded by people talking about writing and words and how to get better. i learned that i could go to school for writing. i learned about different styles and forms of writing. i thought i would explode from excitement.

 

i didn’t look back. i wrote all the time. Letters, stories, poems, articles. i submitted things to our school paper and our local paper and they were printed. We did a special school paper project when i was in third grade (i think) where people from our city paper came in and taught us how to make a “real newspaper” and how to edit and do layouts. i was chosen to be an editor for one of the pages which was kind of a big deal but i was more excited when we didn’t have enough to fill our page and i got to write something for it. i could write for pages and pages. i didn’t mind being assigned essays for class because it meant i could sit at my computer and forget the rest of the world and just write.

 

Somehow when i had a pen in my hand or my fingers on the keyboard everything made more sense. The negativity in my head would quiet itself and i could start to make sense of discussions we had had in class. i’ll be honest, it probably helped that people thought i was good at it. This thing that felt more like breathing than breathing to me, that was so easy was also something that i did well. It was nice hearing those things when so many times i was battling the people in my life and the inner voice in me that was always saying i wasn’t good enough. It was a way for me to get those words and that negativity out of my head and onto the page. It didn’t always appear in a way that made sense but it all had a little piece of me.  i’ve talked before about my struggles with cutting and self harm. i started when i was ten. It didn’t always work but writing was the one and only thing that i could use that would work in the same way cutting did.

 

As i got older and learned that i could use those feelings even more than i ever had before, that i could put down on paper exactly what was roaming around in my head or call out the people that said or did something that had a huge impact on me (positively or negatively.) i learned how to put those words on paper in a way that wasn’t emo-y and teen angsty. i felt so powerful and at the same time i felt like i wanted to disappear. It was like at some point a connection was made and i realized with every poem i wrote (i majored in Creative Writing with a focus in poetry) i was giving more and more of myself over to be picked apart. i didn’t even mind my writing being picked apart, i loved my workshop so much i sat in on it every other time it was offered before i graduated (i didn’t even sign up to audit it, i just went to class every day and sat and participated,) this is also a big deal because i didn’t really talk in my college classes. That’s when my anxiety started to get really bad and most of the time i would sit next to one of my amazing friends and write notes that they would then share. But in workshop it was like another world and i could talk and share. There were days that i had ridiculous anxiety and just sat there filling my pages with notes for myself or for the other women in my class and that was okay. But this thing happened where i realized that with each poem i was handing all of these strangers and many times friends or professors that i respected a page from the book of my life and this fear bloomed.

 

i didn’t care if they told me that the word choice was iffy or if the line breaks didn’t sound right or if the voice needed to be clearer. i cared about the look on their face when they read the words and associated it with me. My professors were good at this, they’re professors, they have practice reading things objectively. But my classmates and my friends weren’t so stonefaced. It was a weird mix of emotion for me because i want my writing to bring out all the feels for the people who read it. i want them to be able to grab hold of a word or a line or a thought and feel like it is theirs. BUT i don’t want them to have that look on their face when they are done or while they are reading like i am broken or that they need to fix something.

 

i know that a lot of this has to do with the fact that i don’t always talk much. Even with my closest friends. Talking just doesn’t come easily for me so when i would write these poems and share them it was the first time they were learning about a part of me. It was their time to click together the pieces of what makes me me. But it’s hard for me because i don’t want to be different to them. This whole conflict mixed with a few really really bad influences in my life led to me stopping. i didn’t write anything that i didn’t have to for a long time.

 

And now i’m at this point where i have been writing again- silly things for work and blog posts and whatnot. And i’m remembering what it feels like and how much more sense the world makes when i do this and how much i love it. But i’m scared too. Do you ever have those times when you have so much emotion pent up inside that you start crying and you’re truly scared because it feels like it will never stop. i have a lot a lot a lot of feelings pent up inside me. i don’t/ can’t always express these when i need or want to. There are times when i know a good cry would make me feel so much better and i can’t. And it all pushes from the inside and makes me feel like i’m going to burst. So i’m scared if i start really writing again that it just won’t stop. That i’ll be a big ball of messy, ugly nonsense.

 

Here’s the thing though, it’s totally okay to be a big ball of messy, ugly nonsense sometimes. It is not okay to hold everything in until i explode or use self harm as a way of releasing that pressure. It’s also okay to have doubts about my writing and okay to feel really warm and fuzzy when someone compliments it. It’s okay to have real discussions with people when they read something- it doesn’t mean they think i am broken, it just means they care and i can ALWAYS use more of that in my life.

 

i was talking to my supervisor briefly about this (in a conversation that also included how i did not in fact smash my phone in the parking lot at work but by jumping off the roof of my townhouse and realizing that i don’t have a “real broom.” Like i said before, pretty great supervisor) and he gave me one of his looks like, “stop being such a moron,” and said “So write. Set aside time every day and just do it.” And he is right. So i’m going back to Laurie Halse Anderson’s idea of writing fifteen minutes every day. If i write more than that, fantastic. If i struggle through those fifteen minutes so be it because i know in the end even if i have pages upon pages of nonsense or fantastic poems that no one reads until a billion years after i’ve died that this is good for me and i need to do it. i need to do it in the same way i need to make an appointment at the doctor and start on my meds again- this is like a medicine for me and i need to take it as hard as that sometimes is.