The Spoon Theory.

The Spoon Theory by Christine Miserandino 

SpoonGirlHat-150x150My 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 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 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 every day?” I explained that some days were worse than others; some days I have more spoons than 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.”

It’s 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 every day? 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”.


Open letter to family and friends.

lookP.S. This is quite a long post so bear with me but I believe it will offer insight and a better understanding.
My illness is a difficult one to understand, even for me. Many of the problems it causes are invisible and difficult to anticipate. I need you to understand that my life is always subject to change because of the unpredictable nature of the illness with which I must live.
First, let me explain the depth of this illness:
 My joints and muscles are under constant attack and can be very sore and painful.
 My skin is very sensitive- sometimes to touch, heat or cold or sunlight.
 My vision, hearing, sense of smell and taste can be affected. I may get a very dry mouth, mouth ulcers, have dry eyes or just have bad taste in my mouth.
 My body or breath may develop an odor.
 The fatigue I get can be overwhelming- walking 2 feet can be a marathon some days.
 The kidneys, lungs, heart and liver can all be damaged by this illness and its treatment.
 There are emotional side effects that come and go like depression, memory loss and difficulty concentrating.
 The medication I take has physical side effects- it may make me lose or gain weight.
 I may need to use walking aids, other aids like a helping hand. Sometimes, I need no help at all.
 I might not be able to drink alcohol or eat certain foods because of my illness and medication.
 The illness is here for the rest of my life- sometimes I will seem very well and back to the old me and sometimes I may become very ill and need to be in hospital. It is unpredictable.
 This is not contagious and there is no evidence that it is something I have inherited or will pass down to my children.

This is all because my immune system does not work properly anymore- it lost its sense of purpose and has turned against my own cells and tissues. Instead of just protecting me from infection. Sometimes I will go into remission meaning that I will do pretty well for a while and sometimes I will have flares meaning that things will get very bad. I cannot tell when a remission or flare will happen and I do not know how long it will last either.
There are some things you can do which would make it much easier for all of us and would be grateful if you would take time to read this and try to understand.
 My body is in a constant battle against itself. This means that I will have good days, bad days and many days in between. I cannot always tell from one day to the next, or even sometimes from one hour to the next, how well I will be, so please be forgiving when I must change plans at the last moment. I do not mean to let you down.
 Some days I will have all the energy in the world and the next day I will be half dead. It’s just the way things are. Please do not say ‘but you were okay yesterday’. I cannot help it
 Please do not judge me as a complainer, whiner or a person making more of their illness than seems necessary. Many of the problems I have are invisible to other people so please be patient, understanding and compassionate.
 I do not want to spend my days in misery, so even if I have pain, am very tired or even if I’m just worried, I will still try to be happy and enjoy myself. This does not mean I am physically better, it just means that I am coping. My health will never be “back to normal”. “healthy” and “better” will always be relative terms for me now.
 I get lonesome and miss being part of the active life I once lead. Remember me-call me, visit me, and do not give up on me. Please do not forget me or stop asking me to do things because I so often say no. it’s not because I do not want to, it’s because I cannot. With a little help from you, I might be able to get more involved. I want to be part of your life.
 It’s okay to talk about what is happening. I would rather you just ask than pretend you haven’t noticed how different I am or just avoid me. It is okay for us to talk about how my illness affects you too. I won’t see it as a betrayal if you talk to me about your frustrations with my illness as long as you don’t blame me.
 It’s okay to say “I know you don’t feel well but I don’t want to hear about it today”. Don’t feel that you are obliged to listen to me but if you as how I am, I am going to tell you so don’t really want to know, don’t ask. I will try to remember that although my illness is a huge part of my life, you may not want it to be a part of yours. If you find me overwhelming, tell me! Challenge me, but please, do it with compassion and love.
 Dont try to tell me that all I need is a little exercise, or just to get out, or try a certain pain tablet, or some new treatment, because it works for you or someone you know. Please don’t feel rejected if you try to offer me a solution for my problems and I don’t take you up on it. I am under close medical care and I’m doing everything I can.
 You may think I just need to push myself a bit harder or that I am giving in to things too easily. One of the problems with this illness is that if I try too hard, it can set me back considerably. I have to be more patient with myself and accept my limits- I don’t like it this way either but I have to realize that one day of trying too hard and doing too much could make me much more ill for weeks. I need to be slow but steady.
 Sometimes, I need to sit down and rest, or take a tablet right away. When it gets like that, I can’t wait. I really am at the mercy of my body and even though it may seem selfish I know that if I don’t take care of myself, my body will get even with a vengeance because it is the nature of this disease.
 Some of my medication may suppress my immune system and make me more prone to catching illnesses. Please let me know if you have a contagious illness like a cold or flu. A simple illness can be quite devastating for me and I have to be careful.
 Please do not belittle my pain or fatigue. It makes me crazy when I hear, “yeah you may think your back aches but you just sit down all day-I spent the day working”. I wish I could have pain because I did something I enjoy-not just because my body is hurting itself. It is okay though to tell me how you are feeling- you may find that I am more compassionate than most when you tell me how you feel because I really do understand pain and fatigue, and you will find I may have some advice that can help you.
 Please do not tell me I need to lose or gain weight. The tablets I take (steroids) make me gain weight, increase my appetite and change the way my body stores fat. I am doing the best I can. Don’t criticize my eating, please. It won’t help either of us.
 I don’t choose to be down and miserable but depression is part of this illness. I need you to remember that I didn’t choose any of what this illness has done to me- I am struggling to learn how to manage, to cope with what it does to me, to grieve the loss of my health and to do the best to live the best life I can. Although I am grieving the loss of who I was before this illness struck and sometimes I get so frustrated I just can’t help feeling sorry for myself, it’s just not in my head- it’s an effect of the illness too that I become depressed and anxious.
 Sometimes I will have “brain fog”. It’s common in this illness to have moments when your memory is poor or to find it difficult to think clearly. It will pass. It’s not permanent- so if something is important to you please don’t forget to remind me. I will be grateful. It’s also okay to remind me to write something down or to check back with me later. Please don’t think I am ignoring you, being difficult or just don’t care. I feel terrible when I forget.
 I need to know if and how I can ask you for help. Sometimes, I will need more help and support than other times. Please let me know if you can help. If you can give me a lift, take me to an appointment; help me with an errand or task- maybe make a hot dish for me some night when I can’t manage to make a meal, please let me know. When I am stuck in the house because things are bad, please come sit with me, even if there is nothing you can do. Little things like calling me every couple of days just to check in- sending a note, card or text can make a huge difference. If you can, please reach out to me. Even if you can’t do anything specific, just is my friend. Your friendship is the most important therapy I have.
 I can still do things for you. Please don’t stop asking me to babysit, to run an errand for you, to do something I have always done when I was well. I’ll be honest if I can’t- please if it’s something I did before, it’s okay to ask me again.
 All in all, I need you to realize that I am the same person I have always been- my heart, soul, hobbies, interests, sense of humor and mind are still there- it’s my body that is turning against itself.
 Please accept me the way I am, please forgive me for the things that have changed, please forgive me and try to understand if I disappoint, try to accept that I am not in control of what this is doing to me. Please forgive me if I let you down. I know that these changes are hard on everyone around me too. I wish it could be different, for all of us. With time, compassion and love, things will eventually settle and we will adapt.
These are the things I will try to offer you:
• I will be honest with you about my limitations and if I need to change plans I will try to be as considerate as I can and tell you as soon as possible.
• I will ask you for help if I need it but I will accept it if you can’t help. I will not have any hard feelings if you say no- I will respect your limits. Please don’t ever feel guilty for being honest with me. I will try not to take advantage of your kindness and support.
• I will accept if you ask me to stop talking about my problems and what is wrong with me. I don’t always realize that I may be getting a bit wrapped up in myself and mi illness sometimes and I don’t want to overwhelm you- just be honest with me.
• I will do the best I can to be cheerful and happy and try to be good company when you visit or call.
• I will try to explain honestly if you ask me about my illness, symptoms and medication.
• If I am feeling sorry for myself, I will try not to take it out on you.
• I understand that you also need to take care of yourself- if you need time, space or to get away for a bit, just be honest with me and I will do the best I can to understand. I really do understand the need to take care of you than most people.
• I will do the best I can to keep myself well by taking medication as I should, by doing what my healthcare workers advise me to and through good diet and good rest, I won’t make myself any sicker or fail to take care of myself.
Thank you for reading this and trying to understand.

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What is lupus?

IMG-20150813-WA0001Ask the medical experts and they will tell you that it is an autoimmune disease, a condition in which something goes wrong with the body’s immune system – which is supposed to fight off viruses, bacteria, and germs – causing it to attack healthy tissue resulting in inflammation and damage in different organs of the body. Its full name is Systemic Lupus Erythematosus (SLE), “lupus” for short. The “systemic” indicates that it affects many organs—the whole system. The “erythematosus,” from the Greek word for “red,” describes a certain kind of rash and refers to the part of the body most noticeably affected in lupus: the skin. “Lupus” is Latin for “wolf”, mainly to describe facial lesions that ate into the skin and looked like a wolf bite. For the moment forget about the wolf, think instead of the butterfly, a word used to describe a painful rash that appears on the faces of many people with lupus. It fans out from the bridge of the nose across the cheeks and ranges in color from rose pink to angry red; though not so noticeable in Africans.
90% of Lupus patients are women especially of childbearing age but also occurs in children and adolescents. Men also can develop lupus and their disease can affect some organs more severely. The cause of lupus is unknown, but it has been associated with genetic, environmental, and infectious causes. The disorder may affect almost all organs in the body, with the kidney being most commonly involved. The disorder may be mild in some cases (for example, only involving the skin) and very severe in other cases (affecting multiple organs, including the brain). The disease course is characterized by flares (intervals of active disease) and remissions (intervals of inactive disease)
While lupus most often affects the joints and skin, causing arthritis and rash, respectively, it can affect any organ system of the body, including the heart, kidneys, lungs, blood, and brain. Because lupus can affect any organ of the body, it causes a wide range of symptoms with some of the more common ones being:
• Fatigue(in 80% of the people and can be debilitating for some)
• Fever (maximum temperature about 39°C)
• Muscle pain
• Hair loss
• Rash (typically in a “butterfly” distribution on the face, across the cheeks, and under the eyes)
• Painless ulcers in the mouth or nose
• Photosensitivity (the development of a rash on sun-exposed skin
There is no cure for lupus, but appropriate treatment can prevent or slow the disease process and control the associated symptoms. Lupus is treated with medications that target the body’s immune system. Medication choices depend on the severity of disease and the specific organs involved. Additional medications may be prescribed for specific symptoms, such as joint pain, and for other manifestations of the disorder, such as high blood pressure if there is kidney disease. As many as 40 percent of all people with lupus, and as many as two-thirds of all children with lupus, will develop kidney complications. People with lupus are leading healthier lives and living longer today, thanks to researchers who continue to discover more about the immune system. With current treatments, 80 to 90 percent of people with non-organ threatening lupus can look forward to having the same lifespan as people without lupus. Positive interactions between lupus patients and their doctors help to improve satisfaction with treatment and increase feelings of hope and well-being. Many symptoms of lupus imitate those of other illnesses, and can come and go over time, making diagnosis difficult. Consequently, it may take three to five years or more to diagnose lupus. For this reason, patients should consult with a rheumatologist (a doctor who specializes in lupus).
Nevertheless, lupus is still a mysterious illness. Like its namesake, it lurks in the shadows of the forest and comes out at night to leave unexplained damage and devastation. And, like the animal in the fable wearing sheep’s clothing, it is difficult to recognize and often gets mistaken for something else.

Now you know a little more about Lupus! Go ahead and share with a friend! Let’s demystify Lupus!

Autoimmune diseases explained.

It is a cold, miserable morning here in Nairobi as I struggle through the creaking joints and inflamed back to give a short account on autoimmune diseases.
I have lived and struggled with multiple autoimmune diseases since I was 13 and no amount of layman terms can adequately explain them. So, forgive me just this once for the technicality of the post, though not too technical, I hope.

The term ‘autoimmune’ means that something goes incredibly wrong in the human body such that it cannot distinguish between the good and bad cells. The antibodies, which are part of the human defense system meant to ward off foreign invaders like bacteria or viruses, start misbehaving and attack the body’s own healthy tissues. These diseases are known to attack the whole body system, or focus on a particular organ. These conditions are chronic, with no known cure and last a lifetime. With such conditions, we learn how to manage and live with them through medication, diet and lifestyle.
The more common autoimmune conditions are:
• Rheumatoid arthritis: inflammation of joints and surrounding tissues
• Systemic lupus Erythematosus: affects skin, joints, kidneys, brain, and other organs
• Pernicious anemia: decrease in red blood cells caused by inability to absorb vitamin B-12
• Vitiligo: white patches on the skin caused by loss of pigment
• Scleroderma: a connective tissue disease that causes changes in skin, blood vessels, muscles, and internal organs
• Psoriasis: a skin condition that causes redness and irritation as well as thick, flaky, silver-white patches
• Inflammatory bowel diseases: a group of inflammatory diseases of the colon and small intestine
• Hashimoto’s disease: inflammation of the thyroid gland
• Addison’s disease: adrenal hormone insufficiency
• Graves’ disease: overactive thyroid gland
• Reactive arthritis: inflammation of joints, urethra, and eyes; may cause sores on the skin and mucus membranes
• Sjögren’s syndrome: destroys the glands that produce tears and saliva causing dry eyes and mouth; may affect kidneys and lungs
• Type 1 diabetes: destruction of insulin producing cells in the pancreas.

Most of these conditions have the same and sometimes overlapping symptoms which makes them difficult to diagnose. It is possible to have more than one autoimmune disease (case in point, me) They usually fluctuate between good days, bad days and days in between. There are remission periods and flare-ups, when symptoms become worse depending on particular triggers such as the cold, the sun.
Treatment is mainly a matter of decreasing the symptoms and controlling the process. Symptoms can be alleviated by:
• eat a balanced and healthy diet
• exercise regularly
• get plenty of rest
• take vitamin supplements
• decrease stress
• limit sun exposure
• avoid any known triggers of flare-ups
Medical interventions include:
• hormone replacement therapy, if necessary
• blood transfusions, if blood is affected
• anti-inflammatory medication, if joints are affected
• pain medication
• immunosuppressive medication
• physical therapy
I hope this leads you to the path of understanding autoimmune diseases!