Posts Tagged ‘tired’

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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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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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trying to write through the really big and the really little.

August 17, 2014

When i was younger there was a bread factory in town that you could take tours at. We went for school and for Girl Scouts. My favorite part of that tour was at the end when they gave each of us our very own miniature loaf of bread. i would take mine to my grandma and she would slice it up and make miniature sandwiches for me.

 

i like miniature things. They feel so easy to conquer. i could put a whole sandwich in my mouth like a giant and think nothing of it. They don’t seem so scary or make me feel so vulnerable. 

 

But right now i keep looking around inside my head and everything seems humongous. The darkness does a great job of covering all of it. And the anxiety likes to form paths. But i just want to stop. Not move. Not talk. Not think. Not be. 

 

My voice feels pointless when everything towers over me. A tiny squeak even i can barely hear. My brain, which is me, but doesn’t feel connected right now keeps rattling off all the things i should have said and done and worn and read and not said and not done. It compiles a list of each imperfection and an explanation of how that will cause failure at some point. 

 

i don’t know if it is a success to look at pictures of scars rather than to create more of my own. Nothing is right right now. 

 

i want to feel like a giant in my head again. i want to eat miniature sandwiches and find words that make noises. i want to just sleep.

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Looking for 1 hole or cave to rent indefinitely.

August 16, 2014

i’m challenging myself to do this again. For at least a week. We’ll see from there. But the words don’t want to cooperate tonight. They’ve crawled deep down inside me so i can feel them and i know they still exist but nothing happens when i try to use them. i wish it were that easy for me. Just go crawl into a hole or a cave somewhere and just disappear until i was ready to come out. i should be looking for the words. Because without them i am looking toward other things to calm the spinning in my head and the pounding in my chest and hum of negativity in my ears. 

 

i feel weak in every sense of the word right now. And i’m too tired to care or do anything about it. That’s all.

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Going back to sleep before work

April 17, 2013

i don’t usually post the train of thought that runs through my head when i feel the way i do right now but i think i will today.

 

i want to say fuck this assignment. It doesn’t matter if i write the words or if i let them sit inside me. It would probably be better for them to sit inside. i don’t care if they eat me alive. Your words aren’t louder than everyone else’s. They aren’t louder than the glint of a silver blade. i’m tired. i’m so tired of all of this. . .

 

It’s an endless loop. Hypnotic almost. It’s true, i’m tired of fighting this all the time. But the reality of it is, i’m typing this right now and in a few minutes i’ll hit publish so i guess there is some part of me that isn’t as tired. i’m really trying to find that part and use it more.

 

P.S. Play this game. It’s important.