Spoon Theory

This is long but well worth the read. Insert Vasculitis and/or Cerebral Palsy where the author says Lupus and this would apply to me.

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.
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".
© 2003 by Christine Miserandino Butyoudontlooksick.com

NaNoWriMo update

Up until last Thursday I had just under 11000 words and was doing okay. Then my computer crashed and I lost everything. I have so far only re written about 2000 words so I don't think I'll complete NaNoWriMo this year.

books

I need something new to read and have no idea what I should try. What is your favourite book and why?

101 in 1001 update

The Mission:
Complete 101 preset tasks in a period of 1001 days.

The Criteria:
Tasks must be specific (ie. no ambiguity in the wording) with a result that is either measurable or clearly defined. Tasks must also be realistic and stretching (ie. represent some amount of work on my part).

Why 1001 Days?
Many people have created lists in the past - frequently simple goals such as New Year's resolutions. The key to beating procrastination is to set a deadline that is realistic. 1001 Days (about 2.75 years) is a better period of time than a year, because it allows you several seasons to complete the tasks, which is better for organising and timing some tasks such as overseas trips or outdoor activities.

Some common goal setting tips:
1. Be decisive. Know exactly what you want, why you want it, and how you plan to achieve it.

2. Stay Focussed. Any goal requires sustained focus from beginning to end. Constantly evaluate your progress.

3. Welcome Failure. Frequently, very little is learned from a venture that did not experience failure in some form. Failure presents the opportunity to learn and makes the success more worthy.

4. Write down your goals. It clarifies your thinking and reinforces your commitment.

5. Keep your goals in sight. Review them frequently, and ensure that they are always at the forefront of your thinking.

My 101

1. Complete summer semester 2008
2. Write a novel draft
3. Buy a smaller laptop
4. Play at least 30 minutes of wii a day for a month
5. Make a budget
6. Drink 1 litre of water a day for a month (0/30)
7. Read the Twilight series
8. Save $5000
9. Find a way to make more $
10. Get some writing published
11. Make $ from writing
12. Eat healthier
13. Walk with k walker again
14. Use my camera more often
15. Sell/trade ds games
16. Buy guitar hero for wii/ps3
17. Cook a meal
18. Blog everyday for a week
19. Have 5 comments on my blog
20. Comment on 10 different blogs
21. Donate to RCH
22. have my medication reviewed
23. See ally and Sebastian again
24. Make fudge
25. Spend more time with Nan & Pa again
26. Create carepage for prayer requests
27. See about helping Zak’s angels team
28. Create Megan’s website
29. Create & publish 101 in 1001 list
30. Collect postcards from around the world
31. Organise dvds
32. Organise cds
33. Volunteer somewhere
34. Go to on a holiday
35. Find a place to rent/buy
36. Organise & pay for care each day
37. Go somewhere on the train
38. Go to the Melbourne zoo
39. Go to the movies
40. Make popcorn
41. Organise internet
42. Cut down amount of lollies/sugar I eat
43. Lose 3 kilos
44. Do a long stitch
45. Watch the movies I own that I haven’t watched yet
46. Go to the dentist
47. Get more fish
48. Organise ipod
49. Take better care of teeth
50. Drink milk each day for a week
51. Do a book purge
52. Sort out clothes
53. Do something nice for a stranger
54. Get a new mobile phone
55. Get a medic alert bracelet
56. *
57. Push self in manual wheelchair more
58. Keep a journal
59. Update cb site everyday
60. Read alex cross series
61. *
62. Eat healthier snacks
63. Sponsor a child (if financially able)
64. Bring lunch to TAFE rather than buy
65. Donate $1 for every goal completed and $2 for every uncompleted goal
66. Wear afos again
67. See a physio/do physio program again
68. Get private health insurance
69. Make pizza
70. Eat icecream
71. Treat myself once a month
72. Go grocery shopping by myself
73. By a new denim jacket
74. Go to a concert
75. Write a song
76. Dejunk my wardrobe
77. Make a cv
78. Post stuff on fanstory
79. Complete a disability blog carnival
80. Complete nanowrimo
81. complete nanoblogmo
82.spend time with blake & Kayden
83. use skype
84. talk to my American friends
85. collect snowglobes
86. treat myself once a week for a year
87. learn to knit
88. learn to cook
89. take keyboard lessons
90. write to 3 famous people
91. re read robin hobb books
92. watch ncis dvds
93. find a hobby
94. join a book club
95. do something outside my comfort zone
96. get seasons 7 & 8 of Mcleoads daughters
97. go bowling again
98. expand my reading horizons
99. read some ‘classic’ novels
100. go to a rodeo again
101. on day 1001 publish a new list

My end date: Monday, 26 September 2011
* private goal
bold goal = completed

drive til the wheels fall off Adam Brand

My daddy threw me a set of keys and said
Look outside and my heart skipped a beat
When I saw what was sittin' in our front drive
That old Ford was as old as me
It had, faded paint and some holes in the seats
It didn't look like much but it was mine
And as I climbed inside

He told me, treat it like it's your last one
And take your time coz it goes real fast son
And don't you worry about breakin' down or gettin' lost
Coz breakin' down's just a hard luck lesson
And gettin' lost helps you find direction
So hit the road and make the most of the gifts you've got
And drive it till the wheels fall off

That old car's seen a lotta things
My first steady job that paid for the ring
That I gave to my first love
Now it's parked outside the church where I'm
'Bout to make a vow to her
My daddy pulled me aside and he said son
I know it's your first and if you want this love to work

You better treat it like it's you're last one

Oh yeah breakin' downs just a hard lesson
And getting lost helps you find direction
So hit the road and make the most of the gifts you've got

Just drive it till the wheels
Just drive it till the wheels
Just drive it
Just drive it
Till the wheels fall off

One more year by Kasey Chambers and Shane Nicholson

This is another song I really like and am inspired by. I'm not even sure why except maybe because I've been "two steps from the edge..." and I'm still waiting for someone to save me.

He was walking across the wire
Holding a loaded gun
Taking out every lightbulb
One by one

And she was building brand new walls
To keep her safe and sound
Sometimes a place to live
Is just a place to hide

One more year
One more year
Let's hold our breath
And give it just
One more year

Well he was sparks and gasoline
All fire and command
The warmest comfort dies
In the coldest hands

And she was two steps from the edge
But holding on somehow
Even God himself couldn't blame her now

One more year
One more year
Let's hold our breath
And give it just
One more year

Now he's working on a plan
Learning to make her smile
Maybe a change of pace
Or a change of style

And she's walking across the wire
Holding a loaded gun
Hoping that what we feel
Ain't what we've become


One more year
One more year
Let's hold our breath
And give it just
One more year

Quotes to live by

If you're an underdog, mentally disabled, physically disabled, if you don't fit in, if you're not as pretty as the others, you can still be a hero.
-- Steve Guttenberg

The only disability in life is a bad attitude.”
-- Scott Hamilton
Placing one foot in front of the other, I've climbed to higher lengths. Reaching beyond my own limitations, to show my inner strength. No obstacle too hard, for this warrior to overcome. I'm just a man on a mission, to prove my disability hasn't won.
-- Robert M. Hensel

Soul Asylum Runnaway Train

This song has always been my favourite. I remember watching the video clip at age ten and feeling like it spoke to me.



Call you up in the middle of the night
Like a firefly without a light
You were there like a slow torch burning
I was a key that could use a little turning

So tired that I couldn't even sleep
So many secrets I couldn't keep
Promised myself I wouldn't weep
One more promise I couldn't keep

It seems no one can help me now
I'm in too deep
There's no way out
This time I have really led myself astray

CHORUS
Runaway train never going back
Wrong way on a one way track
Seems like I should be getting somewhere
Somehow I'm neither here no there

Can you help me remember how to smile
Make it somehow all seem worthwhile
How on earth did I get so jaded
Life's mystery seems so faded

I can go where no one else can go
I know what no one else knows
Here I am just drownin' in the rain
With a ticket for a runaway train

Everything is cut and dry
Day and night, earth and sky
Somehow I just don't believe it

CHORUS

Bought a ticket for a runaway train
Like a madman laughin' at the rain
Little out of touch, little insane
Just easier than dealing with the pain

Runaway train never comin' back
Runaway train tearin' up the track
Runaway train burnin' in my veins
Runaway but it always seems the same

Care vs independence

I am only one; but still I am one. I cannot do everything, but still I can do something. I will not refuse to do the something I can do.
-- Helen Keller

This quote really grabbed me today. In being treated with the Methotrexate I am not able to do some of the things I could before (mostly due to fatigue and nausea) and some of the things I can do I cannot do as well as I used too. I'm struggling with the fact I'm less independent now than I ever was and there are big changes happening with my care situation and also my parents lives. I might be forced to move and will be relying on carers more and more. Its not something I like but I see very little I can do about it. Finding the balance between what I can do for myself and what I need help with has suddenly became hard.

Crazy month begins

Today is day 1 of crazy month. Not only am a studying 2 subjects but I am also doing both NaNoWriMo and Nablopomo. So I think I need to chain myself to my pc. Wish me luck.