Wednesday, January 21, 2009

SPOONS

I have an invisible chronic syndrome. Most people don't realize I am sick because I don't look like it. A woman with Lupus, Christine Miserandino, came up with the Spoon Theory to explain to her friend what it was like to live with a chronic condition day in and day out. I had heard of the Spoon theory before but never really got it until I reread it a few weeks ago.I have been struggling with symptoms for several year but only got a REAL diagnosis a year ago. I am just beginning to accept my limitations. Some days I have lots of spoons when I get up. Others I only have 4 or five.

Christine 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."

I am copying the spoon theory from the website butyoudon'tlooksick.com I know it is long but please read it.

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".

© 2003 by Christine Miserandino Butyoudontlooksick.com

When I first read this I thought only of my mom and what she went thru. I wish I had this story when she was sick. While I don't suffer from Lupus I still must make choices each day as to what I can/will/want to.

count your spoons before you go to bed and Thank God for each spoon you can use and always have one in reserve so you can spend that spoon on a friend.


A little cheese with my WHINE

I started this post as a whine about what is wrong with me but as I wrote it I realzied it was more of an information piece about Fibromyalgia Syndrome and me.

I have been diagnosed fibromyalgia This is not something made up that is just in my mind. This is an honest to god syndrome with real symptoms. I try hard not to complain because I know so many people have worse problems than I do. But it gets really frustrating when I try to vent and hear things like - your mom never complained about her illness, see a shrink it is just depression, the pain can't BE that BAD, lose weight that will solve ALL your problems, why are you always tired, why can't you remember anything, the list goes on.

Fibro is not a well understood problem. It is very difficult to diagnose as there are other diseases out there who mimic Fibro. I have recently had ruled out Chrons, Hep A-C, Celiac, thyroid, and ruematoid arthritis. The main diagnosis for Fibro is something called pain points. There are 18 points where pain typical is in a person with Fibro - if you have at least 11 and everything else has been ruled out then they will agree you have Fibro. Yea for a diagnosis but now how to treat it. It is not a well understood problem so it isn't easy to treat. (there isn't even a correct spelling for Fibro in spell check so how can it be treated if it can't even be spelled?)

I recently went on Lyrica - it works OK but I am on a low dose. Unfortunately I have gained 10 pounds on it. People on it tend to gain up to 10% of their current body weight. I am asking to go off of it Friday. I have learned from reading that pain management is one of the main components. Problem is most regular docs don't understand the amount of pain a Fibro patient suffers. On a good day my pain is a 4 out of 10. Those days I can function pretty well. I try to manage to be a normal housewife and mom on those days. But right now because my former doctor doesn't understand fibro or the management of it I am changing docs, I sit most days at least an 8 out of 10. Yes I know I have given birth and labor was painful. BUT this is different pain. It is hard to describe. Ever have the flu? Of course you have. you know that achy feeling you get when you are on day 2 or so? It is like that but only worse. Some days I feel like someone has poured cement in to my body and I have to stop and think about how to walk.

A second problem is fatigue and insomnia. I get very tired. Look for an artitcle tomorrow about the spoons. It explains the fatigue very well. I have taken to telling Scott I have about used all my spoons for the day. It is a signal to me that I am listening to my body and to Scott that I need some relief from mom/wife duties for the rest of the evening. Some days it happens at 2 or 3 and others it happens at 7. Even then, I try very hard not to miss my bedtime routine with Drew. It isn't is fault that I have this crap. Insomnia is a nightmare - no pun intended. I do try to be a regular mom and not have this impact him too much. I volunteer in his class for 3 hours one day a week. I use all my spoons by then. He has playdates etc. I just have to manage what I do on those days so I am able be alert and able to deal with things.

Another major problem I suffer from is memory loss - some call it Fibro Fog. It is not dementia. I know who people are and what my car keys are for. My problem is I can't remember names of people and things. I never know when it will strike. The other day I couldn't remember what a magnet was called. I knew exactly where it was on the fridge, I knew the color and what I needed off of magnet but DAMN if I could remember what to call it. A week ago I couldn't remember my phone #. I was talking to an insurance company and she rattled off a phone #. I had no clue if it was mine. I had to stop and look for my # to make sure it was correct. It can be embarassing and frustrating. Be patient with me. I don't like not remembering things. It has always been something I was very good at. Scott has taken to having me describe what I am trying to say then he fills in teh blank. I used to get mad when he would guess before i could describe. So we have found a way to communicate. Phil gets pretty frustrated with me but I think he is doing better.

I try to make a joke out of most of this - what else can I do? Wallow in self pity? Nah my mom wouldn't have done that. She was strong. And I try to be like my mom - to a point. She was dealt a very crappy hand. My hand is better but don't blow me off when I try to talk about it. I am not asking for sympathy I am asking for understanding. I don't need advice, I need a cyberhug - softly because hugs can hurt some days. Ask me how I am truly doing if you don't want to know. My typical answer is I am fine. don't press for more information just to be polite. IF you want to know I can answer your questions. I am reading lots on how to work with this.

soft hug to everyone. Look for spoons tomorrow.

FTPD
C