Fibro, Lupus and The Spoon Theory

Howdy, I'm still having some major slowage on my page loading so I'm facing frustration surfing for fine sites to tell you about. I am not usually at a loss for words so I will see what I come up with. Oh yes, I forgot about the keyboard problem already. I look at what I am typing and I am missing letters in every third word. I am so forgetful I hope I remember to go back and fix them all. It cracks me up when I read some of the mistyped sentences, they can read funny, nasty or just nonsense even after the spell checker has gone through. I'm not going to dwell on that, just wanted to let you know why I haven't added any great deal, contests or blog sites recently. I should get that corrected ASAP.
I will tell you Fibromyalgia Network and Prohealth websites ( I will post the hyperlink when I get the chance) are excellent places to get info on fibro, chronic fatique syndrome and a whole slew of other diseases. I have a subscription and am a member of Fibromyalgia Network and get their newsletter, which is more like a magazine, that comes out quarterly with great articles, both from doctors and sufferers.
Because I had a lot of excitement Sunday celebrating my birthday I am paying for it today with an intense migraine. No, I didn't drink too much. I don't drink a drop of alcohol. I have to pay a price for exerting energy.
Scrapbookers, don't be scared away. I said in the beginning subjects that would come up would be fibromayalgia and papercrafting. The one is my escape from the mental pain and anguish of the other. This blog hasn't been hijacked :-). I want to share with you an explanation of the spoon theory and it will explain what I mean when I tell you I used way too many of my spoons yesterday. what follows is lengthy but considering the amount of people, women mostly, who have fibro or lupus, I think it is good for people to understand these diseases a little better.


The Spoon Theory

Even though the following is regarding Lupus, it is pertinent for Fibromyalgia, Chronic Fatigue Syndrome and other Chronic Pain Disorders.
I did not write this, I wish I had. 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 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” It’s 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".

AUTHOR: of The Spoon Theory is Christine Miserandino

If you made it through this read, thanks. If not, try again another day.

Karenraye

IF and More IF, Fibromyalgia

If—

by Rudyard Kipling

If you can keep your head when all about you
Are losing theirs and blaming it on you,
If you can trust yourself when all men doubt you,
But make allowance for their doubting too;
If you can wait and not be tired by waiting,
Or being lied about, don’t deal in lies,
Or being hated, don’t give way to hating,
And yet don’t look too good, nor talk too wise:
If you can dream—and not make dreams your master;
If you can think—and not make thoughts your aim;
If you can meet with Triumph and Disaster
And treat those two impostors just the same;
If you can bear to hear the truth you’ve spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to, broken,
And stoop and build ’em up with worn-out tools:
If you can make one heap of all your winnings
And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings
And never breathe a word about your loss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: ‘Hold on!’
If you can talk with crowds and keep your virtue,
Or walk with Kings—nor lose the common touch,
If neither foes nor loving friends can hurt you,
If all men count with you, but none too much;
If you can fill the unforgiving minute
With sixty seconds’ worth of distance run,
Yours is the Earth and everything that’s in it,
And—which is more—you’ll be a Man, my son!

Source: A Choice of Kipling's Verse (1943).

That is a great poem! I really love it and would be interested in people's interpretation of the line If you can fill the unforgiving minute with sixty seconds' worth of distance run,

I was also wondering..... If all the world's a stage could I get better lighting please?

If a tree falls in a forest and no one is there, do the other trees laugh at it?

If con is the opposite of pro is congress the opposite of progress?

Why do nurses wake you up to give you sleeping pills?

Oh alright, I'll get serious again. I'll go all goofy another night and also talk about super powers like I mentioned in a recent post, read on if you missed it, because I would love to hear some other people's powers as well. I have the ability to eat or at least prepare great amounts of food in my sleep. Usually whats left in the morning is crumbs and empty containers and faint memories of putting large amounts of Hershey's syrup in a full bowl of Rice Krispies, or was it two bowls? I definitely recommend that one. Hmm I wonder if I ate all of the Rice Krispies last night?

Over the past week I have been brushing up on my reading about Fibromyalgia and after having this for 16 years I am still finding out new symptoms and developing new symptoms. When one of my sisters had to have chemotherapy and worried about her hair my own started falling out. I tried to blame it on a cheap hair product. At about the same time I developed awful rashes and itchy spells. I found out from a book that both of these symptoms are of fibro. About the hair the book said in a fibromyalgic the hair is defective. It falls out and is generally unhealthy as are the fingernails. I knew the burning on the bottom of my feet was the fibromyalgia, but it turns out that the odd patches of rashes and itching are also. The fibromyalgic , according Doctor R. Paul St Amand, has a reaction from their own sweat that produces severe itching and hives and "funny rashes"{yes, that is a doctor's quote, layman's terms}. Doctor St Amand co-wrote the book 'What Your Doctor May Not Tell You About Fibromyalgia', which I find very informative. Though I haven't achieved pain free status like some of this docs patients, I do try to follow his theories and I take Guaifenesin as often as I can to help with symptoms. I am a rare case in that I am allergic to many anti-histamines, but yet my body produces too many histamines. It is getting that time where my brain starts slowing down and wanting sleep. I would like to pick up the topic of fibro another time and hope the is someone out there interested or needing answers. I know of some helpful websites, I am just too tired to post them tonight. I had a long day - I started celebrating my birthday today.Yee Haw! It isn't til the 25th but when you move slow like I do you have to start early!

Yee Haw!

A Fun Day

Today was a long and painful day, but it was a fun day. I attended my first crop/class and finished the majority of a two page layout. I will post it as soon as I get the photo or photos in place and get the final embellishments taped down. I used the Bittersweet collection from Basic Grey. Pinks and browns and hearts and buttons. It is really cute. Now a need a picture of my sweetheart or maybe two. I might do the journaling in the form of a poem but I've written so many poems about him already, I think he's getting tired of it or embarrassed. That is too bad because love is in my heart and in the month of February my heart won't be still. Love poems have been flowing from me like I may have a whole new book category. Love poems, children's poems and spiritual or inspirational poems.
I was having a lot of pain and a migraine all day. I had a migraine shot on Monday and on Friday but they are so stubborn they just keep coming back. My back and neck pain was really bad too, and to top it off it was very cold and icy out. Before I went out I took a long hot shower and tried to loosen up all my muscles and joints. I loosened up with a few stretching exercises too, that is pretty necessary. I wear a TENS machine (an electronic stimulator) to help with the pain on days like this, so I spent quite a while hooking up four sensor pads and all the wires. I took all my pills for the day plus packed along a few extras that I might need. Then I looked at the clock and thought, No wonder I'm always running late everywhere I go, it takes me forever to get ready! Then you have to factor in that the fibro affects my memory and concentration so I forget what I went into a certain room for and end up running (well not actually running) around in circles. My husband has a little joke and if he sees me walk fast he says I'm running, because my running days are over. I suppose if I really had to I would get that adrenaline rush and I would find it in me to run, but without a fire or a bad man chasing me, this girl ain't running!

Okay, time to quite talking about me. Time to take care of me and get some sleep, well maybe I;ll take a quick sweep through the sites and see what's out there. Maybe I'll find something to share. I did learn something about the spellcheck feature on this site tonight. If you don't click on the words - done spellchecking - when you finish, and then you type some more and click on the spell check, it won't catch your errors. Hmm, I wonder if I've left typos slide through in the past.
Later, peace out.