Articles about living with chronic illness

[Guest guest]

I don't know if this has been posted here before. In case it hasn't

I wanted to share it. It's an article I found on

www.butyoudontlooksick.com. That's a great site, there are message

boards there for people who are trying to manage life w/chronic

illness. I found the posts on marriage relationships (especially S-E-

X) really helpful. )

I believe that I will get better from my illness once I am explanted,

but I have been sick so long I do feel as though I have a chronic

illness (even though I haven't been diagnosed with one). There are

so many emotional and mental ups and downs that go along with what

all of us are dealing with. People who don't suffer from these

things just don't understand. These articles really help explain it

in a way that I think others can understand. I plan on having my

husband read them so we can discuss them.

The Spoon Theory

by 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.

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 " , 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 " .

© 2003 by Miserandino Butyoudontlooksick.com

This one is by a different author:

" My Secret is safe with ME " -what I wish people knew about me.

It has been said by many people that I am a very good actress. " But

You Don't Look Sick " seemed to be all I heard. Is this a good thing?

Sometimes it is an appropriate thing to say after a speaking

engagement, or when I used to

act in class, etc. Most times I take it for the compliment it is, all

the while smiling, knowing exactly what it doesn't mean. It simply

means I am not the woman/ the girl I was before. I " act " like a

healthy person the best I can. I take on this role as if I will

someday win an award for best portrayal of a healthy person. The

downside, is that there is no trophy, there is no prize, I just end

up alone with my feelings and everything I have kept inside. I act

like I don't care- but I do. I act like I am not scared, but I am.

Most people use the " acting " comments as a way to tell someone that

they are outgoing, social, funny or even dare I say sparkle. There

are those people who walk in a room and you know you want to hang out

by them. Well, that is

me. I have the funny story. I get groups of people up and laughing. I

walk in not knowing a soul, and leave with everyone knowing my name.

What they don't know is that this really isn't me. What you see is a

very calculated

illusion of the woman I want to be. I want to be everyones friend. By

all means I hate the word illusions. I hate the tone it puts out

there for others to decipher, but being plain old is worse.

The illusions started small like putting on extra blush to cover up

when my Lupus rash showed. Then I learned how to put on fake eye

lashes to fill in when my hair started falling out. A little extra

lip gloss goes a long way....It gets you farther if you remember to

out it on. That is just some of the tips and ways of my disguise.

Now comes the real " art of War " - the real plan of attack. Before I go

anywhere, I need to know if I am even able to drive. If I am not, can

I get a ride. I need to plan to pack a huge (but cute) pocketbook to

make sure it holds all my medications that I need, and my " in case of

emergency " type things. Now with all this time that has past- I am

already late to wherever I want to go. But now I still have to plan

the outfit from the feet up, and base every choice on how good or bad

I feel. Should I wear my hair down? Or is it falling out and maybe

more will come out and embarrass me. Should I go spray tanning, or go

all out with the make up to cover for the fact that I am a walking

zombie that needs many layers of blush and concealer. Now onto the

clothes.... well, will it be hot? cold? Does this night involve alot

of sitting (ouch-pain) or standing/ walking which could put me in

worse pain if given the wrong choice. Don 't even get me started on

the big shoes decision.

I would rather say that I am fashionably late to a party by making up

some lavish crazy story, which then draws the conversation close and

the intensity closer. The truth is, If I was to ask you if you wanted

to hang out with me - I know I would not be your first choice. I am

not saying that to gain sympathy. I am saying it because everyone

wants to mingle/ hang out with the sick girl--- But god forbid

something grows out of that chance meeting.... what now? Now I need

to worry about if this person can handle my life, my choices, my

energy highs and lows, The billions of things I am forced to obsess

over on a daily basis. Normal healthy people obsess over shoes,

shopping, what to eat, make up, TV shows, whatever.

Don't get me wrong... I enjoy all of those things too. I just can't

obsess, because I quite simply do not have the energy or time, or

dependable pain free day to count on. I have no choice, I have to

live my life different from everyone else around me. I have to think

about just getting up out of bed. I need to

think about my medication. Do I need to stand for long periods of

time? Where is good for me to eat, transportation etc.... Just so

many little things that people do not put much thought into at all.

I have thought about these things so many times, it is like living in

a different world, with different issues, different priorities, and

an entirely different language that I can only speak. There are times

when I do let go and speak

to my sick friends and it feels like a light bulb has gone off - or

maybe a switch has been turned on - but I feel a level of

understanding and pure comfort around the people who understand both

me and the " acting " me. They

know me both. They know that with me-- you get the real and the fake-

just to survive. If you are a good friend you can dig through the

illusions and the crap and find me somewhere inside. What can I say,

It is the " secret society of the sick " and I am proud but not lucky

to be a member.

I hate people seeing me when I am sick and especially when I am

looking sick. I really hate being pale, with faded eyes and with

splotchy skin and bad hair. At least I know that some of these things

are things I can work on, but others- they just are. I can't make

this big red blotchy rash go away. So I wear loads of make up or

clothes that cover it up. That is my official secret. I am out! I

choose what to wear based on how bad I look. I choose where to go, by

how far is it. Can I safely drive there, will the people there want

to see me and be happy or excited? Will I be able to leave without

any financial issues or friendship ramifications. I hate walking

around in public with a limp, or worse, a set of crutches, a cane or

a wheelchair. I hate not being able to wear tall sexy shoes, because

I can

not walk in them. I hate trying to quickly think of the much cooler

reason for having a cane, or wheelchair. I hate that I don't know a

cooler reason. I desperately wish I was cool.

Big bags are trendy right now. Which is great and very convenient for

me as in this role I am playing. My character wears big bags that

hold lots of stuff. No one would ever know what is in my bags. Unless

one spilled over- which is a nightmare I have often. I pack up every

possible medical bottle or device. I pack all kinds of makeup to make

me look less ghostly. I bring emergency phone numbers, I bring

EVERYTHING.

I do love my life, but I hate alot of things lately.

I hate having a scribe write for me in class or having my hands hurt

too much to type.

I hate popping pills, and having people ask me personal health

questions that I don't want to answer.

I hate that everyone thinks any time they talk to me is another

opportunity to give unsolicited medical advice.

I hate living up to other people's expectations of what a healthy

person should be.

I hate living up to other people's expectations of what being sick is.

I hate thinking about how or when I might die, because for me it

might be a " when day " and not a " someday " .

I hate never feeling good enough, quick enough, pretty enough, or

just " enough " .

I hate that my husband's family must think that he made a bad choice

for a mate. I hate the term " damaged goods " .

I hate that I know my doctors better than I know my friends and some

of my family.

I hate that no matter how hard people try, (or don't try) They will

never know the loneliness of being in a crowded room knowing you are

the only one who tells time by pills, energy and spoons.

I hate people that are inconsiderate, and make plans without thinking

of all the walking involved, or come by unannounced when a phone call

can help you so much.

I hate people who complain, " I need a nap " , " I need some caffeine, I

have a headache " , " I have pms cramps " , or even better... " I have a

cold... I am Ddddddyyyiing! " . These expressions need to be banned,

because they do not

adequately describe how you are feeling and they belittle what pain

and sickness I may be feeling.

I hate having to defend that I am a good mother, wife, daughter,

sister, or friend.

Most of all lately, I hate people who judge, and give me advice, or

questioning stares of how I handle my diagnosis, or my life.

Basically I hate letting people see the effects of my disease. I

don't care if they know that I'm sick, I just don't want them to have

to see it, or deal with it.

So I don't let them. In a funny way this puts me more back in

control. I get to pick who knows the real me. I get to pick who to

share my soul with. I decide who to let in. This isn't a pride thing

for me. I don't worry about people thinking I'm weak because I know I

am stronger then I can even imagine. Despite my disease there has

been nothing in my life that I didn't want to accomplish that I

didn't find a way to. It is like the scene in the Wizard of Oz when

the wizard (talking about himself, in a big booming voice) " Pay no

attention to the man behind the curtain " . When you watch the movie-

everyone knows that the little man and the wizard are one in the

same. But because of his presence, his knowledge and might I even say

his Sass, the people want to believe in him. He hides his flaws with

his smarts and pizazz.

My main reason for hiding my disease is that I don't want a watered

down life. I don't want the simplest option given to me because

somebody thinks I can't handle any more. I want to decide.

I want you to like me and love me because I am a great person, not

despite the lupus- but maybe because of it. Maybe having this disease

taught me the skill of being a chameleon, mixed with the

communication skills of a great

counselor, added to a touch of structure and organization from living

by the clock and the pills. Maybe I am cautious because I am scared.

I live in two worlds- the world of the healthy- where I put my best

face out and do anything my heart is set to and I also live in the

land of the sick. Here I am understood, but I don't have that much

fun.

I worry, I rest. I follow rules, and I live a life in pain. The

unfortunate thing- is you really can't live for very long in two

worlds. It is a dizzying, exhausting dance to be two different

people. I guess I have grown up a bit. I quite simply do not have

the desire to act anymore for you. This is who I am. Good days and

bad. Sometimes, there will be days where I am the funny girl that you

just can't believe is sick. Then another day or week later- I may be

that really sick girl who used to be funny. It's all when you catch

me.

I am doing my best.

I want to have one world with one life- no acting- just me. I make no

excuses any more for my choices, my feelings, my health. I am trying.

I am me.

I wish I could tell you all this and more, but sometimes I think the

illusions are easier for you to live with. Let's make a deal, you can

pretend I am healthy, and I can pretend I am happy. I am sure it

would work for some time... but would it really be working? Do you

really care " How are you feeling " when you ask? There are so many

things I wish people knew about me, but I won't say, because you're

not truly listening.