Monday, April 12, 2010

I have Lupus...and spoons

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Welcome to my blog! This is probably the first time a few of you have been here and I'll thank Rachel Anne for sending you. I asked Rachel to help me out to share something important.

Systemic lupus erythematosus is an autoimmune disease that causes your immune system to be almost over-active and start attacking your own body. This disease affects mostly women of childbearing age (doctors think female hormones may have something to do with it) and is more common in minorities. We say lupus patients are like snowflakes--no two are alike. Most of us have joint pain that can be debilitating at times and most of us experience extreme fatigue. A lot of people have a rash across the bridge of their nose, sometimes called a "butterfly rash" and sun sensitivity. A lot of times it can just be a general feeling of "unwellness", like the flu, even with a fever. It can affect almost any system of your body. My lupus affects my kidneys.

I was diagnosed the summer after my freshman year in college and it only took a couple months after the first suspicious medical test to be diagnosed. Unfortunately, because I didn't realize what was happening, I lived with the symptoms for about two years. Because the symptoms of lupus can be vague if it does not affect a major body system, diagnosis is very difficult. There is no specific test for general lupus. I was diagnosed because of my kidney symptoms through a biopsy. Many people don't realize what is happening to them or doctors can't make sense of their symptoms. You might just sound whiny.

When I was in college, I realized that the group of people most likely to have lupus was the least likely to know anything about it. Practically no one I knew at school knew what lupus was or anyone else who had it. That's why I participate in lupus awareness events. I didn't stop to think that something could be wrong with me when I was feeling lousy and it was just lucky I had a urine test that uncovered some strange results. Since mine was in my kidneys, not doing anything and allowing that damage to occur would have resulted in some serious issues. There are many people who don't realize that lupus is very treatable, but untreated it is life-threatening.

I have been in remission now for two years last month and there's really nothing I can't do now. The reason I am well is because I take all of my medications and I get plenty of rest. I know of people with lupus who don't want to have to take medications all the time or miss out on things so they don't take care of themselves. It's really important and I'm proof that just maintenance of your disease can afford you the chance to live normally.

May is Lupus Awareness month and many local chapters of the Lupus Foundation have walks in the first weeks of May. If you're interested in more information about walks in your area or your local chapter or just more about lupus, visit www.lupus.org

I realize that there may be women reading this who don't have lupus, but may have MS, RA, or fibromyalgia, or another similar disease. I'd like to also refer you to the website butyoudontlooksick.com. There's a great essay there I'll go ahead and post here. I'll preface this by saying that this is not at all the type of life I have now, but this is what I experienced for a couple years. Simple tasks can be really difficult and the energy isn't always present. Thanks for reading:

The Spoon Theory

by Christine Miserandino 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”.

15 comments:

  1. Hi, Kelley. I am here because of Rachel at Home Sanctuary. Let me first say how sorry I am that you have lupus. I am sorry for the losses that you describe, but I am encouraged that you chose to show the rest of us a tiny peek at what it's like to have a chronic illness. And one other thing: I will say a prayer for you today, and not to get 50 points with Rachel:) but because I believe that God is merciful. I will ask Him give you extra "spoons" today.

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  2. Hi, Kelley, am here from Rachel Anne's. I know EXACTLY what you mean. I was diagnosed with RA when I was 13 and spend a great deal of time picking and choosing and trying very hard not to sound whiney. :) I am blessed because we found things that usually work but it also means my flareups are much more surprising. I also have a friend with lupus who has struggled for as long as I have known her.

    And the Spoon Theory is the BEST description of life with a chronic illness, especially an autoimmune disease since most people look at you and think you look perfectly healthy and are shocked at flareups. I have lived with it for so long that I don't even think about how other people manage any more. It doesn't occur to me that "normal" people don't have to choose their spoons each day.

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  3. Hi Kelley - I'm popping over from Home Sanctuary at Rachel Anne's suggestion. I'm sorry that you are struggling with Lupus, but glad to hear that you are in remission and taking good care of yourself with rest and meds. I hope that you have a deep and abiding faith in God and find comfort in His Word. I can't imagine surviving the daily battle of life without my faith and trust in Him.

    I loved the 'story of the spoons' and look forward to checking out 'but you don't look sick' - I hear that a lot! I too have to daily 'budget' my time and energy because of incurable, untreatable liver disease. I have found many blessings in chronic illness - God is good and He gives joy in the midst of trials. I feel very blessed in so many ways, though there are times when I really struggle with wanting more for our children. I'd like to be the fun mom and have lots of energy to do more with them! Still, I see God's hand on their lives and know He is using our struggle to grow godly character in our two little blessings that otherwise might not be.
    Thank you for making us more aware of the struggles of lupus - it's always good to learn something and see that others struggle in ways that we cannot fully understand! May the Lord bless you!

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  4. I linked here from Home Sanctuary. Thank you for the reminder that not everybody is able to function in the same way as others. Your spoon story was very impacting - thanks for sharing. I will be praying specifically for you today...and feeling a huge dose of gratitude (much needed for me today) for the things I can do.

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  5. Kelley, it is so good to see you writing at the computer!:) We are asking God to bless you with more spoons, and all the rest of the silverware too! We serve a big God who is able to do more than we can ask or think, so we might as well ask for it all...according to His will.
    Isn't it hard to deal with a disease that others cannot see, nor do they understand?! My mother suffered strokes which only affected her speech and hearing but my!...people would treat her as though she was stupid or mentally disabled! In our society it is sad (and disgusting) to see how because a disability is not visibly noticable, then all sense of compassion is abandoned for rudeness and disinterest. I was raised that we are never to busy to offer a helping hand or kind word...and that wasn't that many years ago!
    One of our dearest family friends has Lupus and misses so much time with her kids and grandkids. Her's unfortunately is not in remission but she loves the Lord and never gives up.
    Kelley, thank you for being vulnerable and sharing your life with us. We care and want you to know that you are not alone, we will keep you in our prayers.

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  6. Hey Kelley, I came here by way of Home Sanctuary. Your story fascinated me for the same reason as a friend of mine named Kyli. Kyli has one of the so-called "hidden diseases" a condition called POTS. Its yet another condition that doctors will take forever to diagnose, because they think you're simply making things up.
    I'm still undiagnosed. I can't count the number of times I've been told "that's not normal, but there's nothing wrong with you." I'll never understand how that even makes sense. I don't understand the arrogance that doctors have, to assume that simply because they don't immediately know what's wrong, that you're just being a hypochondriac. I'll be praying for you...praying for an endless supply of spoons. :)

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  7. What a poignant illustration. I've never thought of a chronic illness this way. A childhood friend of mine was diagnosed with lupus, but I haven't ever asked her about it when I have had the chance. I should write her a note.

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  8. I love the spoon theory, exactly what my daily life is like. Some days I have lots of spoons and almost feel normal again and then the next day, very little spoons. At 34 years old, I moarn the old me that could do anything. But I've leared to allocate my spoons to my husband and daughter and well the rest, can just wait. Thank you for your story, I will definitely become a reader of your blog.

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  9. Kelley, Thank you so much for sharing your story with the Company Girls and for shedding some light on lupus and what it is like to live with a chronic illness. I too, will pray for "more spoons" in your life...and also for healing. I would love to see the day that you forget to count out spoons because you feel so good :)

    Thoughts and prayers, Rachel Anne

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  10. That is an incredibly powerful story and I'm saving it to pass on to others. Thanks for sharing it.

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  11. I just have to say "Thank you" for sharing that story. My mom has had hepatitis c for at least 15 years and had a liver transplant in 2005. This story will help so many people understand these types of illnesses soooo much better. So thanks again.

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  12. Hi Kelley. I found your blog through Rachel Anne,also. I really enjoyed reading your current entries and quite a few of you past posts. I think that you did an awesome job explaining the daily struggles of a chronically ill person, using spoons. It was brilliant. I can hardly wait to share it with my daughter. She is a college senior and has been suffering from an as of yet undiagnosed illness that has been going on all through High School and college. She never got an ounce of understanding from anyone her age. You look fine, you're just lazy, a hypochondriac.. etc. One of her college roommates even told her that she was a waste of a 21 year old 'cause she couldn't stay late at parties and she chose not to drink. They also told her she was a bad designated driver because she had to go home, to bed very early in the evening and they had to find another ride home. Getting through college has been tough, though her Junior and Senior year spent away from home has been a great experience for her, even though she has to come home once or twice a month for DR appointments and stop after 1 1/2 hours to take a nap before she can make the second half of her drive home. No one there really understands the spoons that she had to conserve for simple things. Thanks for sharing your story.

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  13. So cool that you're getting the word out. And way awesome of Rachel to help promote it. I'm so happy you're still in remission - I know Brian is, too.

    I was planning to do the Walk here this year, but I have kind of a major conflict with the date. Are you doing a team, and if so, can 'virtual walkers' join?

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  14. Hi Kelley!
    I too found you through Rachel Anne's blog. I am so sorry you are suffering with Lupus. I was unofficially diagnosed with Lupus 5 years ago when my first child was born. He was born with neonatal lupus. It was a total surprise as I never had any health issues that I was aware of. My second child was also born with neonatal lupus, despite the slim odds that he would have it, but thankfully his issues were less severe.

    Praise God I have never had to deal with much regarding the Lupus, just minor things here and there. But it is amazing how all my weird little issues now all seem to point right back to the Lupus.

    I pray that you find healing and that your healthy days far outnumber the bad.

    Thank you for sharing your story.
    Dawn
    http://frymoments.blogspot.com

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  15. Hey everyone,

    Sorry to be reaching out via blog comment but I couldn't find a contact email address.

    It's great to read about those with Lupus and other autoimmune diseases bringing attention and awareness to their cause through blogging. To that effect I thought you all might enjoy this Lupus infographic (http://www.achieveclinical.com/news/lupus-a-closer-look-at-the-autoimmune-condition-infographic/). I think the illustration at the bottom lays out the physical symptoms in a way that is easy to remember.

    Best,
    Don Givens
    Achieve Clinical

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