Sunday, August 24, 2014

The Spoon Theory

Today I wanted to share a story with you. Some of you may have heard it before, some not. I, and others with chronic issues, have found it a great way to help our loved ones come to understand a little better why we don't always behave the way they expect us to. I, for one, have had difficulty for years trying to explain to friends and family members why I can't do a certain activity with them, or why I'm not happy when I presumably should be. For any of you having difficulty explaining your disability to others, this can be a great place to start.


The Spoon Theory by Christine Miserandin



     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. 
     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”.

I am so glad Christine shared this story and I hope it can help you. Her website is wonderful and is called But You Don't Look Sick. Please visit it for more information.

Tuesday, August 19, 2014

My Story, etc.

For those who may care.

     My name is Olivia. This blog is born of my frustration with the condition of women's health care and care for those with chronic pain. I am currently 21 years old and have suffered from chronic pain, specifically a disease called endometriosis, for years. The cause of my frustration began more than two years ago when I stumbled on to this phenomenon.

Endometriosis : the presence and growth of functioning endometrial tissue in places other than the uterus that often results in severe pain and infertility. (Merriam-Webster)

     I will delve more into endometriosis (or endo as I familiarly call it) after I give you some back story. Puberty (sorry, didn't say this would be fun, just hopefully educational) was not easy for me. I had no idea what a period actually was until the day I ran into my mother's room screaming that I was bleeding. This was not all her fault, as I was a very shy, very scared, easily offended little lady. Nonetheless, I was frightened. After my fears were assuaged, all was fine. For a time. Not long after my first turn with my menses, I started to get a bit worried again. 

     With every cycle that passed, my "time of the month" grew more and more painful. Not many years later, I was popping ibuprofen like a junkie and having to replace my "ladies napkins" all to often. Even sooner after that, I was lying on my bathroom floor for hours at a time afraid I would not be able to hold down my meal from the sheer pain. I was loosing blood at alarming rates and it felt as though my cycle had inverted itself to spend more time on the horrid, bloody side rather than the happy, cramp free, and kind side. (This pain was worrisome because I have suffered from back pain and migraines for most of my life and have an abnormally high pain tolerance.) I was going to a gynecologist at the time. I wanted birth control like most young women do, to "ease the menstrual symptoms" and other reasons that none of us want to admit to our mothers.

     I kept telling my doctor that the pain was becoming insufferable, that my anemia was the worst it had ever been in my life. He prescribed the the hormonal ring NuvaRing that he told me would help regulate my period, but I still didn't feel as if I could even leave the house when my time inevitably came every month. It was unpredictable as well. (Squeamish beware: just skip to the next paragraph.) My menstrual  discharge had started changing. One day it would be red as a tomato, the next it would be dark and extremely clotted (which was very painful). It would be so heavy I would leak through a tampon, pad, underwear, and pants in minutes at times. It would seem to be gone for a time and then return with a vengeance.

     My doctor kept telling me to manage the pain, that the bleeding was just a phase, it could have been a change in hormones, a harmless interaction with my depression medications, any number of things. So he had me convinced for a while that I was just hormonal and over-sensitive. 

     In the midst of all this, I met a kind young mother (for purposes of maintaining her anonymity we'll call her Clarissa) who lived two doors down from me. I still love and adore her now, although I don't spend as much time with her as I did then. She has Multiple Sclerosis, and she is one of the strongest, happiest, kindest, smartest women I know. I was finishing high school online and had very few friends, so I had a lot of free time to spend with her and her little girl.  I'm glad I did; She taught me too many things to count (about babies, boys, baking, being confident in your own body, etc.). One day we had a conversation that changed my life.

     As I was talking with her and playing with her daughter (we'll call her Annabelle,) I brought up some of my menstrual discomfort (I had become very comfortable speaking of such things with Clarissa). So I went into great detail, even of my painful and traumatizing experiences with sex. She promptly told me of some of her own experiences.

     For years, she (in addition to her MS) had been suffering from a condition called endometriosis. She said my symptoms were exactly like hers and that I needed to make an appointment with my doctor to see if that was where all my issues were coming from. I heeded her advice immediately. But… Before I made it into the office, I decided to do some research on my own.

     What I found online frightened me. I kept seeing words like "infertility," "hysterectomy," "lesions," "cancer," and "incurable." While some of those words are applicable in a discussion about endo, these are mostly worse case scenario type words. Not knowing this at the time, I went into my doctor's office afraid. I now know I was looking in all the wrong places, because there are so few reliable resources for endo in general. Just my luck, I had managed to find some of the misinformed ones.

     When I mentioned my worries to my doctor, he indicated that it was highly unlikely. I was confused. He told me that endometriosis is very rare, especially in someone so young (I was eighteen at the time. I have since found out it is not as rare as most believe it to be.) I still questioned him and he began to consider it. He gave me a full exam with ultrasound and said I looked completely healthy, aside from a tilted uterus and slightly swollen ovaries (which can be painful, but only to a certain degree). He didn't see any reason for me to be having so much pain and bleeding. After more discussion he agreed that endometriosis was a possibility but left the option of finding out to me and my mother. The only way to actually diagnose endo is through a surgery called laparoscopy. This involves small incisions being made into the lower abdomen, one right at the belly button, and one or more elsewhere nearby. 

     Carbon dioxide gas is pumped into the abdomen to safely make room for the laparoscope to move freely.  The doctor will make another small incision through which to insert a tool to help move and lift the organs so the laparoscope can get as good a view as possible. If any endometrial tissue is found, the doctor will use a laser to burn it's surface to prevent it from growing further. This technique is called ablation. A sample of the tissue is usually taken as well to determine that it is indeed endometriosis and not something else for which it could have been mistaken.

     After all located lesions have been ablated, the tools are removed, and they allow most of the gas to evacuate the abdomen and they stitch you up. My incisions were sealed and covered with a sticky plaster-like substance that would dissolve over time. The process is sometimes filmed, and snapshots are often taken of the endometrial tissues. Looking at the photos post-op, it can seem crazy that something so small can cause so much pain. My recovery lasted a little over a week but I had a handful of other issues on my plate.

     My procedure was performed more than two years ago.

     Today, I'm afraid to say I'm not much better, but I'm doing my research and trying to stay on top of it. Most days are good! However, some days I don't leave the bed except to relieve myself (and only with help.) I have started this blog to help myself keep track of my own experience and maybe help a few other women out there who are struggling. With so little information, it can be very overwhelming trying to figure out your best options. I have hope that with awareness, clear information, and early detection, we can get to a place where endometriosis is a very manageable disease. 

     If you have made it this far, thank you for reading. If you have any further questions you would like to ask me, feel free. I always enjoy talking to others. Email me: notwhatmydoctortoldme@gmail.com

     Also, there are a few good resources out there that I would like to recommend if you or someone you know may be suffering from endometriosis. Don't ignore the pain. Take control.

The Endometriosis Association  

What is it? What are the symptoms?

Treatment Options