The Spoon Theory

[Guest guest]

The Spoon Theory

http://www.butyoudontlooksick.com/2004/11/the_spoon_theory.php#more

 

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

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 cooki

ng 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 " .

 

© 2003 by Christine Miserandino

Butyoudontlooksick.com

This is copyrighted!

 

 

 

 

 

[Guest guest]

What a great analogy. As someone who has Fibromyalgia I can relate. I have many

good days, but then there are those bad days when I can barely walk and need to

rely on a cane. Spending the day on my feet can cause multiple muscle spasms

throughout my body and legs and cause extreme pain. Things I used to take for

granted I can no longer do. It is hard for people to understand that you may not

look sick, or appear to be in pain and therefore expect that you can do all the

same activites or wonder why you are so tired all the time. Thank you for your

post.

[Guest guest]

Has anyone ever tried things like taking extra Magnesium, minerals, Ocean Plant

Extracts, selenium, liver and colon cleanses, treatment for candida, etc and

felt better?

 

Just some thoughts

Tara

 

 

 

Debra Hoek <dkhoek2 wrote:

What a great analogy. As someone who has Fibromyalgia I can relate. I

have many good days, but then there are those bad days when I can barely walk

and need to rely on a cane. Spending the day on my feet can cause multiple

muscle spasms throughout my body and

[Guest guest]

I bought some magnesium and chromium because I heard that they help.

The problem is I also have acid reflux and the pills get stuck going

down. The other issue is the short term memory loss and the fibro

fog that is a part of fibromyalgia. I have used cleases and am

researching candida treatments and diets.

 

, Tara Borosh

<colbyjack98 wrote:

>

> Has anyone ever tried things like taking extra Magnesium,

minerals, Ocean Plant Extracts, selenium, liver and colon cleanses,

treatment for candida, etc and felt better?

>

> Just some thoughts

> Tara

[Guest guest]

I have found that analogy useful - I am glad you did too. I

don't have FM , I have Myalgic Encephalomyelitis [ ME ] and was also chemically

injured so now have multi-allergies and chemical sensitivities. These have

caused magnesium deficiency and poor circulation which is why I take a lot of

magnesium both orally [ as much as I can without it going threw me anyways] and

also transderamal magnesium [which fortunately bypasses the digestive system so

don't need to worry about it going threw me.]

But sometimes I do need to use a cane, either because of the ME or

the mag deficiency.

I like not looking 'sick' from the point of view that looking sick

as well as feeling it is depressing, at least for me. But I guess as with

most things, there postive points and negative ones.

blessings

Shan

 

 

 

The Spoon Theory

 

Posted by: " Debra Hoek " dkhoek2   dkhoek2

 

Wed May 2, 2007 9:02 am (PST) What a great analogy. As someone who has

Fibromyalgia I can relate. I have many good days, but then there are those bad

days

when I can barely walk and need to rely on a cane. Spending the day

[Guest guest]

Have you tried liguid supplements like ionic liguid magnesium,

zinc, pottassium, etc ? You can also get transdermal magnesium

chloride which bypasses the whole digestive issue at it is used on

the skin -- either sprayes and rubbed in or in footbaths or ordinary

baths. You can also take B-12 that is very well absorbed either

sublingualy or injections. Also glutathion can be taken using a

nebulizer plus a nasal spray - for that matter your can get B-12

using a nebulizer and/plus a nasal spray too.There are several ways

to ingest supplements other then in tablets or capsules. In fact,to

my knowledge, all other ways of getting supplements are more

effective then orally.

Some supplements are just not absorbed well when taken orally

for several reasons, digestive problems being just one of those

reasons.

However you can also greatly improve and heal your digestion [which

includes acid reflux] by ingesting cultured cabbage especially though

following the SCD food plan will also fix it. Kefir would also help

it but not as much as the Cultured Cabbage and/or Saurkraut.Kimchi is

good too.

 

Cultured Cabbage Juice - Make the Best Lactobacteria

http://www.newmediaexplorer.org/chris/2003/09/18/cultured_cabbage_juic

e_make_the_best_lactobacteria.htm

 

blessings

Shan

 

, " dkhoek2 "

<dkhoek2 wrote:

>

> I bought some magnesium and chromium because I heard that they help.

> The problem is I also have acid reflux and the pills get stuck going

> down. The other issue is the short term memory loss and the fibro

> fog that is a part of fibromyalgia. I have used cleases and am

> researching candida treatments and diets.

>

> , Tara Borosh

> <colbyjack98@> wrote:

> >

> > Has anyone ever tried things like taking extra Magnesium,

> minerals, Ocean Plant Extracts, selenium, liver and colon cleanses,

> treatment for candida, etc and felt better?

> >

> > Just some thoughts

> > Tara

>

[Guest guest]

Sounds like you are on the right path now with your research...may I suggest...

Try CALM (Magnesium citrate powder) or MagChlor. Start off with small amount

and then work your way up. You may need a higher amount than most, but too much

can cause diarrhea.

I found that Ocean Plant Extract is nice for other trace minerals, thyroid,

cleansing as well.

 

A good book I would highly recommend for you to read regarding candida, etc

(anything with low immunity) is the Body Ecology Diet by Donna Gates

You can check out the website: www.bodyecologydiet.com

I found the book cheaper on www.amazon.com

Healing takes place in the gut!

 

Blessings,

Tara

 

 

dkhoek2 <dkhoek2 wrote:

I bought some magnesium and chromium because I heard that they help.

The problem is I also have acid reflux and the pills get stuck going

down. The other issue is the short term memory loss and the fibro

fog that is a part of fibromyalgia. I have used cleases and am

researching candida treatments and diets.

[Guest guest]

Some brands of Magnesium Chloride are very expensive. Magnesium

Chloride is used in making tofu, which is much much less expensive.

 

" Magnesium chloride is an important coagulant used in the preparation

of tofu from soy milk. In Japan it is sold as nigari (the term is

derived from the Japanese word for " bitter " ), a white powder produced

from seawater after the sodium chloride has been removed, and the

water evaporated. Nigari consists mostly of magnesium chloride, with

some magnesium sulfate and other trace elements. "

http://www.answers.com/topic/magnesium-chloride

 

Alobar

 

On 5/3/07, Shan <surpriseshan2 wrote:

> You can also get transdermal magnesium

> chloride which bypasses the whole digestive issue at it is used on

> the skin -- either sprayes and rubbed in or in footbaths or ordinary

> baths.

[Guest guest]

Adding to what Shan says:

 

Indigestion is usually taken care of with enzymes. A small amount of

raw pineapple is a great source or take the tablet form right along with

the supplement. Also, correct digestive flora is a great benefit. A

good probiotic along with the prebiotic Innulin will help along that line.

 

Chromium is extremely hard to absorb. Chromium Chloride is .5%

absorbed. Chromium Picolinate is not much better and both are a waste

of money. If you can find a natural source of Chromium made from a 100%

food base, you have a great chance of benefiting. One that I am aware

of is " Innate " available at www.HeathTruthRevealed.com (I receive no

benefit from these recommendations).