PLEASE READ THIS … if you have a parent that has been diagnosed with Diabetes, a husband that has been diagnosed with Hashimoto’s Disease, a girlfriend that has been diagnosed with Graves’ Disease, a best friend with Lupus or a child that suffers from Multiple Sclerosis. The common thread, aside from the fact that these diseases are attacking and changing the lives of your loved ones, is that each of these is one of the more than 80 known Autoimmune diseases (AI). Some real quick facts about Autoimmune Diseases that I guarantee you weren’t aware of … • AI diseases have been cited in the top ten leading causes of all deaths among U.S. women age 65 and younger. • AI diseases are the major cause of serious chronic diseases. • AI diseases represent the fourth largest cause of disability among women in the United States. • Patients with AI diseases face an elevated risk of certain cancers and the overall survival rate among these cancer patients is worse than those patients without a history of AI disease. And the non-statistical tragedy of Autoimmune Diseases is that often the patient with the AI disease is labeled a chronic complainer during the early stages of the illness and is often misdiagnosed and medicated for depression. This is devastating to the person who eventually questions their own sanity as they try desperately to find out what is wrong. Tragically, many of these patients suffer significant damage to their organs in the meantime and end up carrying this health burden with them the rest of their lives because of the delay in getting the actual AI diagnosis. I have written a blog, participated in videos and reached out to many individuals to try to help with their suffering as they try to navigate through this devastating part of their life. I am also active in the worldwide effort to reform the current medical system’s handling of Thyroid disease. I am also a sufferer, with two confirmed severe level Autoimmune diseases and on the verge of a third Autoimmune disease. And despite all of the knowledge I have tried to absorb, the lengthy discussions with my Thyroid specialist and my involvement in the sites within Facebook, I still struggle to even begin to convey what this truly has done to my life and to me, the person. I read a story that stirred up a lot of emotion, as while reading it I lived the story. It is truly the best story to help those that love us, to start to understand the true struggle and complexity in which we live our lives … every day. I was very "heavy" in the relationship and we agreed that weekdays were such a struggle, but weekends were different. As I’m reading this story, I know my spoons were probably gone by noon during the work week. As most of us do, I take my work very seriously and in addition to the stress that is inherent, I put a lot of myself into what I do -- but I just wanted to lay my head on my desk by noon most days. I had given away, used up, all of my spoons. I truly did not know I had such a limited supply and I definitely did not save any for the balance of my life. However, when I woke up on a weekend, I had all of my spoons and was at least a little closer to the real me than after a long day of work. I’m so sorry for coming home to someone who deserved the best, without any of myself left to give or to participate in her life, absorb her pain or to protect her or to support her. Unfortunately, I now also know that it requires a spoon to pull yourself out of the mental fatigue to be open minded and to be loving, to ignore and rise above the physical aches to help around the house, to stop the spinning in your mind and slow your heart down to understand and not take things personally and become defensive and to not blame others, to see beyond your own struggles and truly cherish the relationship, to find a desire within yourself to work out to help your own low self-esteem and not ask her to bribe me into working out. You see, all of these things that I had no spoons left to use on, I was asking her to use up her supply. Although perhaps a bigger supply, it is not fair to ask for everything and have so little left to give back. I think back to how difficult last year was for me, but I also remember telling her on the phone the previous fall that I would just cry on the way to work for “no reason”. I’m sure she felt responsible or that I was unhappy with her or us – but now I know that I just used up too many spoons getting ready in the morning, trying to drag myself up, fighting the lack of confidence, the mental anguish. Either way, I was not able to put her mind at ease and to reassure her that I was just sick and was having a bad day … without many spoons left. As a side note and perhaps the most important note to me, is I may not be much healthier today (yet) but knowing what I know now, I promise the first thing I would do every morning is grab the first two spoons and put them in my pocket. And no matter how the day went, how bad I felt, I would always come home with these two spoons – one for her and one for us. I know you are all probably wondering what the heck spoons have to do with any of this, but please read this story and I hope it will become very clear. But You Don’t Look Sick? … My best friend and I were at dinner, talking. Like normal girls our age, we spent a lot of time together 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 yourself 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 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 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 an Autoimmune disease, 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”.
Posted on: Fri, 21 Jun 2013 23:38:02 +0000
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