hoeveel lepels heb jij vandaag?

Stel hier je vragen omtrent ME (cvs) en help elkaar verder.

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Gast

hoeveel lepels heb jij vandaag?

Bericht door Gast »

hoi allemaal,

aangezien ik ook een immuunziekte heb die sle achtig wordt genoemd(kan overgaan in sle, hoeft niet), kijk ik ook weleens op reuma-sites en fora.
daar staat een verhaal over een meisje dat aan een vriendin uit wil leggen wat sle oftewel lupus nu eigenlijk met je doet.
eigen net zo moeilijk als uitleggen wat cvs nu eigenlijk betekent, en wat de vermoeidheid en lichamelijke klachten allemaal inhoudt.
lupus geeft een scala van lichamelijke, soms ernstige klachten, en vermoedheid kan een grote rol spelen.
helaas is het verhaal in het engels, maar niet moeilijk te volgen voor de meesten van ons.
ik vind het een orgineel verhaal wat heel eenvoudig uitlegt aan mensen die helemaal niet kunnen indenken wat de vermoeidheid nu met ons doet, de hele dag door
voor wie intersse heeft www. reuma.startpagina.nl/prikbord
en lees hoeveel lepels heb jij vandaag?
groetjes van marion

Toevoeging van moderator Marloes: Het verhaal staat hier in het Nederlands geschreven
Marloes
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hoeveel lepels heb jij vandaag?

Bericht door Marloes »

Hieronder het verhaal:

Of klik in de openingspost op de link naar de nederlandse vertaling

The Spoon Theory

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”

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".
Keep on rockin'
Gast

hoeveel lepels heb jij vandaag?

Bericht door Gast »

hoi marloes,

wat fijn dat je voor een vertaling hebt gezorgd,
het is nu nog duidelijker geworden,
bedankt
marion
Nienke
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hoeveel lepels heb jij vandaag?

Bericht door Nienke »

Wat een mooi verhaal zeg, het is een goede manier om iets uit te leggen! Zelf baal ik er altijd van dat ik moet kiezen en nooit iets kan doen zonder na te denken..

Liefs, Nienke
Zoek je eigen geluk, want dit kan niemand anders voor je doen!
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Alie
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zeker een mooi verhaal maar dat lijk mij ook erg moeilijk om het zo te moeten uit leggen kost zoveel energie
gisteren met medisch fitnes vroeg een vrouw wat ik allemaal mankeerde ik vertelde haar dat ik dat liever niet meer vertelde
omdat ze het mischien niet begreep en zij was onbekend voor mij
ze was wel een beetje pissig op mij maar ik schiet er niets mee op om het te vertellen alie
Gast

Bericht door Gast »

hoi alie,

ik kan me voorstellen dat je niet altijd zin hebt om het allemaal uit te leggen.
ik heb dat zelf ook, als ik alles moet vertellen wat ik mankeer, weet ik niet eens waar te beginnen!
en er zit ook verschil in belangstelling en nieuwsgierigheid !, vandaar dat ze misschien wat pissig reageerde, als je zegt ik mankeer een heleboel moet dat voldoende zijn voor mensen die je niet eens kent
groetjes marion
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Alie
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Bericht door Alie »

hoi marion
daar heb je gelijk in ,maar sommige mensen blijven zo doorvragen
en dan word ik pissig. en dan zeg ik wel een s kan u mij beter maken
dus heeft het geen zin om sommige mensen wat te vertellen meestal beginnen ze dan over hun eigen moeheid en pijntjes
er zijn ook mensen die het echt menen maar dat voel je ook aan
liefs alie
Nienke
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Bericht door Nienke »

Jah, dat klopt alie! Dan krijg je vaak het verhaal: Ik ben ook wel eens moe..

Kus, Nienke
Zoek je eigen geluk, want dit kan niemand anders voor je doen!
Biancavia
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Bericht door Biancavia »

Wat een ontzettend mooi en duidelijk uitgelegd verhaal.
Erg goed om zelf als voorbeeld aan anderen te vertellen.
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Renka
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Bericht door Renka »

Wat een mooi verhaal!!

Via die site kun je op een site terechtkomen waar ze allerlei artikelen hebben met 'foute' opmerkingen. Zoals een shirt met 'It's NOT all in my head'. Dit is de site:
http://www.cafepress.com/bydls

Mijn vriend en ik willen bij een volgend artsenbezoek een shirt dragen met:
"My disabling chronic illness is more real than your imaginary medical expertise." :lol:

Als dit onder reclame valt, dan graag verwijderen of even aangeven.

Liefs, Karen
Laatst gewijzigd door Renka op 01 sep 2007, 16:55, 1 keer totaal gewijzigd.
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heikenie
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Bericht door heikenie »

Mooi verhaal en ja Alie ik zou ook niet weten waar de energie te halen om iets zo uit te leggen.
Ik kreeg echter het idee om dit eens uit te printen en te laten lezen aan zij die ECHT geinteresseerd zijn in hoe het is voor mij.

Het gaat de laatste tijd erg slecht met me en ik voel dat ik er bozig om wordt, vragen erover zou ik echt niet kunnen beantwoorden nu zonder dat mijn bozigheid zou naar buiten komt.

Pijnlijk is ook om te merken hoe mijn dochter nu met die zelfde problematiek te maken krijgt. Hoewel de ziekte zo goed als onbekend is en niemand in haar kennissenkring er al van gehoord heeft krijgt ze toch elke dag " GOEDE " raad over hoe ze nu om moet gaan met haar ziekte.
Iemand presteerde het zelf om te zeggen: " Moest ik in jou geval zijn dan zou IK wel ALLES doen om te genezen" !!!! Alsof mijn dochter niet graag zou willen genezen.

Liefs

Heike
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Renka
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Bericht door Renka »

Ik had zelf bedacht om het via de mail door te sturen aan mensen. Dan kunnen ze het eens rustig lezen als ze zin hebben. Misschien dan met CVS in de tekst, als er geen copyright op zit.

Succes Heike! Herkenbaar wat je vertelt.

XX Karen
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