posted 25 February 2005 12:10               

I think I remember someone having written a letter to family members about being compassionate.

posted 25 February 2005 13:27            

In there it might have the links of other wonderful comments in other posts.

Good luck.

Otherwise, direct them to Treepatrol's newbie links where THEY can take the time going there and starting to read themselves!

posted 25 February 2005 18:19               

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 this time, with a 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 choice, 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 a 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".

posted 25 February 2005 18:21               

A Mother's View

Written by: Janet Miserandino

My daughter Christine has had Lupus, with the accompanying vast array of symptoms, since she was 15 years old. During college, in her attempt to explain her illness, she wrote about Lupus and its debilitating effect on her energy, by a comparison to waking up each day with a limited amount of "spoons". Having spoons has always been an inside joke in our family. If Christine was having a particularly bad day, she might call me and say, “Mom, I have no spoons left today." I often sign my cards to her-"May you always have spoons."

Christine has tried to educate our family, friends and even total strangers with her analogy. Well this is a view from the other side of the spoon, so to speak. Having a child means worrying your whole life about their happiness. Having a child with a chronic illness means worrying about grades, dating and makeup; but also about pain, medical tests and future prognosis. Somehow you survive.

Christine is often asked about what it is like to have Lupus. You see, she doesn't look sick, so she is a curiosity to some, an enigma to others. Few people ask me what it's like to have a child with Lupus, and I think it's because they already know- it's every parent's worst fear. No parent wants to be healthier than their child.

Christine lives with chronic pain and fatigue and a constant pendulum swing of good days and bad. Being her mom means struggling not to be so effected by them, especially the bad ones. I am not so good at this. I have often found myself overwhelmed and in bed crying, after seeing Christine in a flare-up, or hearing that down, resigned tone in her voice. It's a roller coaster ride I would prefer not to be on. But then there are her good days, and when Christine is having one, she seems to want to pack a lot of life, laughter and joy into 24 hours and luckily for me , I have often been around for the ride. Christine, more than most, realizes the gift of a "good day', a gift most of us take for granted. Hopefully, she has rubbed off on me, and I try to appreciate the little things. I remember once taking Christine home from a doctor's visit and she asked me to stop for a Mc Donald's ice cream flurry. I felt rushed and tried to dissuade her, but she persisted, saying "mom, it's such a little thing and it will make me happy." I don't really know why I remember that so vividly, but I think of it often and I try to cherish the little things that make me happy, like a warm cup of tea, or relaxing in my recliner.

Having a child with Lupus means trying to coax her into experimenting with vitamins, heat, cold, massage therapy, herbs, and physical therapy, whatever. I always think everything will work, while Christine approaches life more cautiously and often thinks nothing will work. She has been known to say I dwell in Pleasantville, but I like it here and plan on staying. Pleasantville is filled with hope and promise. I think in dealing with any chronic illness you always need hope, otherwise you might as well raise your hands up in defeat- the illness has won.

I used to save my sick days at work for my chronic colds, but for the last decade I hoarded them and used them oh so sparingly, just in case I needed them if Christine got sick. I found myself conveniently sick on weekends, as if my body knew I had no time to be ill. In reality, I always felt I could never be as sick or as tired as Christine must feel. That's a difficult one- there's a lot of guilt in feeling better than your child.

Being Christine' mom often means waiting a lot. I've become good at waiting- waiting in doctor's offices, waiting for test results (now that seems like an eternity), waiting in emergency rooms (always in the middle of the night), and even waiting for Christine as her sluggish body tries to catch up with her good intentions. It has meant being flexible, as plans need to be changed the last minute, to accommodate her unpredictable flare-ups. I used to feel that everything was important, but I've learned from Christine that the world doesn't come to a halt if you are a little late or even have to miss something. I remember once trying to get her out the door in order to be on time for a doctor's appointment, and Christine was moving very slowly that morning. I was upset because we would be late, but when we got there we still ended up waiting for almost an hour. A lot of what I worry about never materializes or turns out not to be as important as I thought. I'm still trying to remember that.

As a parent of a chronically ill child, I have encountered those who stop asking about how Christine is doing and how she is feeling, because they feel uncomfortable with any negative response. I thought of lying and saying things are wonderful, but most of the time I just say things are good and bad, which they usually are. There are those that continually ask about Christine, and I appreciate their good wishes, concerns and prayers. My closest friends don't just ask about Christine, they ask about me. It's easy to get lost in the shuffle. It's easy to remind your child to take care of herself, and run yourself into the ground in the process. I have become so much better at being the caregiver than taking care of me. I am finally learning that lesson from Christine too. I have seen how important it is for her to take care of her body and her spirit, and I am thankfully realizing to do the same

On the other side of the spoon it can be depressing. If your loved one is down, it's a constant struggle not to be down too. Beside dealing with your own depression, the parent juggles emotions of fear, disappointment, anger and fatigue; all the while trying to be optimistic, calm and hopeful. I have learned though a lot from being on the other side of the spoon. I (along with Christine) am stronger than I thought. I have discovered many life lessons about patience, acceptance and joy for life I have shared many special memories with Christine, with a greater awareness and appreciation for them. I am so proud of the woman she has become, not because of the Lupus, but despite it. I guess I can say the same for me.

posted 25 February 2005 18:26               

by Nicole Cody

Don't be fooled by my skin. On the outside I look whole. Healthy. I am not who I appear to be. Do you do this with characters inside your head, or people whom you meet on the street? Think that the way they look is how they are? Think of a woman, with a swing to her lithe hips, cigarette clenched between thin red lips. Do her clothes and body express exactly what's on the inside of her?

Think about this for a minute. How looks can deceive. Maybe the leather clad, hip swinging rail thin chain smoker is actually trapped inside the middle-aged body of a pudgey librarian. Or the athletic and handsome youth has the sickly, smokey rattle of addiction inside him.

Flaws. The unexpected. I’m a writer who has come to appreciate flaws. To see the gift in them. A flaw within a character enriches on the page or the screen much as it does in life. For what ever goes to plan? And how much of that planned and replanned writing or event then loses the spontaneity, the richness, the truth? Just like in life… Things are seldom as they appear. Dig deeper. Be brave enough to create rather than contrive. Be brave enough to admit the flaw within yourself, or the person in front of you. Even when it's ugly. Even when it's raw or prickly. Even when it's beautiful and good. Life has many textures and tastes. And I am coming to discover that all of them are necessary, and all of them are good.

It is difficult at times for me to come to terms with the fact that my current medical condition is hidden from most people’s view. I have a flaw which is wreaking havoc with my life. But it’s hidden away in my brain. I don’t have an obvious handicap or deformity. There is no blood gushing, or nasty pustular rash. I look, well… normal. And because I look normal, most people accept me as normal, and question my actions when I act like a crotchety old forgetful woman, who is the person I feel like a lot of the time. I may feel tired and sick, even downright deathly. When I feel this bad it shows, but it still isn’t very dramatic. Most people go for a more obvious solution to how I look. (Oh, you look a little pale today, dear. Didn’t get much sleep last night hey? Was Hubby home? Nudge. Nudge. Oh, bad hair day today, Nik?) At times like this I wish I had a sign around my neck, or a flashing light, so that others could know when to show me some concern or compassion, or at least stay out of my way!

People ask me how I am, and I always tell them, "Fine, thank you." "Good" they say. "You look well". And I do. Mostly. You cannot see or smell my rot. But I can taste it.

My girlfriend went to the corner store recently to buy a loaf of bread, and as she was being served she asked the man behind the counter “How are you today?” To her surprise he started to tell her of an enormously painful cold sore that was starting to develop on his top lip, and how he had been awake all night with explosive diarrhoea from eating bad take-away food.

She related this story to me after she asked me how I was, as friends do when they meet for coffee. I had avoided telling my friend about my recent diagnosis of a bacterial infection of my brain. It just seemed like my life was sounding so ‘Days of our Lives’. My friend has listened as over the past fourteen years I have been through a litany of maladies, as well as crazy family and personal dramas. Even I am bored of how un-normal so many aspects of my life seem to be. In fact, I’ve stopped telling people I am ill. So, with a steady gaze I looked in my friend’s eyes and said, “I’m fine, thank you.”

She then put her hand on my arm, and said, “You’re not, are you?” “It’s okay. I asked because I DO want to know. Please tell me.” And she related how asking the man in the shop the same question had made her realise that she DIDN’T want to know how he was - she had just been making conversation.

So you see, that is how life is. Some people really care - and they really do want to know. A lot of people around you have problems of their own. A head full of personal worries about things YOU may never know about. They may keep those things hidden from you, and that is their choice. And when they ask you how you are, they will just be making conversation. The hard part for us is knowing when to talk, and when to shut up and say “I’m fine, thank you.”

I have found it helpful to have a support group - a few friends and family whom I have shared my entire medical history with. And then I keep them updated. This allows them to know how I REALLY am, and it saves me from putting up the “I’m fine!” pretense all of the time, which can be downright exhausting. There are other people whom I’ve explained a shortened and scaled down version of my health situation. That’s more than enough for them to cope with, and we’re not close enough for more information to be warranted.

But I no longer try to explain the ins and outs of how I really am on the inside to most people, because even some of your family and friends just won’t want to know. Or they’ll want the Readers Digest version -short, sweet and with a happy ending. Or even worse, they won’t believe you, because you look fine to them! Know what I mean?

Within your life you have a circle of people who matter to you. Let them know how you feel. Try and explain to them what a good day is like for you, and a bad day. They might not have ever realised. Especially if you’re like me, and look mostly okay on the outside. Maybe you’re not doing yourself any favours by martyring on as if you ARE fine. Because acting this way, how will others ever know that you’re just dying inside and that some days are the most supreme effort for you while everyone around you is on cruise control!

People on the street, or outside your circle of people who matter? Well, find a standard answer to their standard question and leave it at that. You have better things to do with your energy and time. Don’t be offended by their lack of interest - you may not be interested in their tax dilemmas or Grandma Hogan’s flatulence problem that they want to tell you about either!

posted 26 February 2005 12:20            

Treepatrol & Tincup, if you happen to read this, please add this topic link to your NEWBIE section "links for family members". Thanks.

Medical was DOWN when I attempted to go in 3 times.