Monday, 29 August 2011

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.


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”.

© Christine Miserandino

Monday, 22 August 2011

How Not To Make Porridge

By L Clarke (2011)

How not to make porridge:

1. Add out of date milk to the porridge without realising.

2. Overfill the bowl before you put it in the microwave.

3. Get it out as soon as its cooked, sloping the bowl of steaming hot porridge over your hand.

4. Dance around the kitchen going 'OW!', hanging onto the bowl and sloping more contents over the floor,
counter, your foot, and anything else you can find.

5. Put the bowl down on the counter. Stare in disbelief at the mess.

6. Belately react to the pain in your hand and shove it under the tap.

7. Clear up the mess ineffectively.

8. Try to eat what little is left of the porridge. Screw up face in disgust at the taste of the gone-off milk and spit it out again.

9. Give up and leave the kitchen, peeling your socks off the sticky floor with each step.

10. Feel hungry and return to the kitchen again to make some porridge for breakfast.

(Clarke, L., 2011)

Saturday, 13 August 2011

New Parliament Demands following Looting

Parliament are meeting today to discuss an EU Directive to force all shop keepers to fit safety glass to shop windows. This is due to concerns that looters may be injured.

A Parliamentary spokesmen has said that ‘ Shopkeepers failing to meet the new requirements will be fined heavily and possibly forced to close their businesses.’

As a result InjuryLawyers4You have launched an advertising campaign asking looters to get in touch if they have been injured whilst looting.

Environmental groups have expressed concerns that looters have not been using biodegradable carrier bags to take home their loot.

Safety groups have noticed that many looters riding bicycles were not wearing helmets. A Police Spokesman replied that officers have been instructed to stop any looting youngsters seen riding on the pavement and issue fines. Schools will be organising cycling proficiency courses.

Some groups of looters have been reported holding peaceful protest meetings as they do not agree that shops should shut earlier than normal.
A car that was trashed by looters and burnt out had been left parked the following day on double yellow lines. A parking warden wanted to attach a parking penalty notice to the windscreen but as there was no windscreen he was unable to issue the fine.

Volunteer groups who turned up to help clear up the looters mess have been told to go home by local Council Officials due to Health and Safety concerns. Council Officials said they could help if they had appropriate safety equipment and were able to provide certificated evidence of training. Officials of the Union for Council Cleaning Services have objected to any help from volunteers as this is seen as devaluing the skills of their workers.

The TV Licensing Authority have said that any looters seen carrying a stolen television ‘WILL REQUIRE A TV LICENSE’ and that they will track and fine anyone using a television without a license.

Many police have reported that the front line riot duty has made a welcome change from completing paperwork. However, senior police officials are warning that all leave for the next 10 years will be cancelled so officers will be able to complete all the paperwork required following the 4 days of rioting.

Thursday, 4 August 2011

Credit Crunch Tips

DON'T waste money on expensive ipods. Simply think of your favourite tune
and hum it. If you want to "switch tracks", simply think of another song you
like and hum that instead.


DON'T waste money on expensive paper shredders to avoid having your identity
stolen. Simply place a few dog turds in the bin bags along with your old
bank statements.


HOMEOWNERS: Prevent burglars stealing everything in the house by simply
moving everything in the house into your bedroom when you go to bed. In the
morning, simply move it all back again.


SAVE money on expensive personalised car number plates by simply changing
your name to match your existing plate. - Mr. KVL 741Y,


DON'T waste money buying expensive binoculars; simply stand closer to the
object you wish to view.


AN empty aluminium cigar tube filled with angry wasps makes an inexpensive
vibrator.


SAVE electricity by turning off all the lights in your house and walking
around wearing a miner's hat.


HOUSEWIVES, the best way to get two bottles of washing-up liquid for the
price of one is by putting one in your shopping trolley and the other in
your coat pocket.


OLD telephone di rectories make ideal personal address books, simply cross
out the names and address of people you don't know.


SAVE on booze by drinking cold tea instead of whisky. The following morning
you can create the effects of a hangover by drinking a thimble full of
washing up liquid and banging your head repeatedly on the wall.


SAVE a fortune on laundry bills. Give your dirty shirts to Oxfam, they will
wash and iron them and you can buy them back for fifty pence.


OLD people, if you feel cold indoors this winter, simply pop outside for ten
minutes without a coat, when you go back inside you will really feel the
benefit.


WHY pay the earth for expensive jigsaws? Just take a bag of frozen chips
from the freezer and try piecing together potatoes.


MAKE your own inexpensive mints by leaving blobs of toothpaste to dry on a
window sill. Use striped toothpaste to make humbugs.


SHOPPERS, when buying oranges, get more for your money by peeling them
before taking them to the counter to be weighed.

Monday, 1 August 2011

Dear Pets...

Dear Dogs and Cats: The dishes with the paw prints are yours and contain your food. The other dishes are mine and contain my food.
Placing a paw print in the middle of my plate and food does not stake a claim for it becoming your food and dish, nor do I find that aesthetically pleasing in the slightest.

The stairway was not designed by NASCAR and is not a racetrack. Racing me to the bottom is not the object.
Tripping me doesn't help because I fall faster than you can run..

I cannot buy anything bigger than a king sized bed. I am very sorry about this.
Do not think I will continue sleeping on the couch to ensure your comfort, however.
Dogs and cats can actually curl up in a ball when they sleep. It is not necessary to sleep perpendicular to each other, stretched out to the fullest extent possible. I also know that sticking tails straight out and having tongues hanging out on the other end to maximize space is nothing but sarcasm.

For the last time, there is no secret exit from the bathroom! If, by some miracle, I beat you there and manage to get the door shut, it is not necessary to claw, whine, meow, try to turn the knob or get your paw under the edge in an attempt to open the door. I must exit through the same door I entered. Also, I have been using the bathroom for years - canine/feline attendance is not required.

The proper order for kissing is: Kiss me first, then go smell the other dog or cat's butt. I cannot stress this enough.

Finally, in fairness, dear pets, I have posted the following message on the front door:

TO ALL NON-PET OWNERS WHO VISIT AND LIKE TO COMPLAIN ABOUT OUR PETS:

(1) They live here. You don't.
(2) If you don't want their hair on your clothes, stay off the furniture. That's why they call it 'fur'-niture.
(3) I like my pets a lot better than I like most people.
(4) To you, they are animals. To me, they are adopted sons/daughters who are short, hairy, walk on all fours and don't speak clearly.

Remember, dogs and cats are better than kids because they:
(1) eat less,
(2) don't ask for money all the time,
(3) are easier to train,
(4) normally come when called,
(5) never ask to drive the car,
(6) don't smoke or drink,
(7) don't want to wear your clothes,
(8) don't have to buy the latest fashions,
(9) don't need a gazillion dollars for college and
(10) if they get pregnant, you can sell their children ....