It’s been a long time since I’ve posted here or on my other sites. This last year has been rough, but not for Meniere’s Disease. My Meniere’s symptoms have been mostly under control, with occasional flares. Most of my challenge the last year and a half has been Rheumatoid Arthritis. Truth be told, the last year has been pretty rough. Medicines have not seemed to be working since last fall. I have just had the best two weeks since last fall though and am starting to feel like I’m coming back. I plan to write all about it here (as I don’t intend to start an RA blog…. may change my mind on that though…)

I can’t say when I’ll get things written up here, but am eager to write.

I don’t know exactly when I first read “the spoon theory” – but WHEN I did, I knew “that’s me.” I hope it’s okay to repost this here, it was originally posted at But you don’t look Sick. Last I looked I wasn’t able find the writeup on the butyoudontlooksick.com site. (Although I did find a fun list of the top 10 worst suggestions given to someone with a chronic illness. I’m sure most everyone can relate.

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. 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”.

© 2003 by Christine Miserandino Butyoudontlooksick.com
Please note that this story is copyrighted and should not be reprinted in any form without permission from the author.

Feel free link to “The Spoon Theory” at www.butyoudontlooksick.com/the_spoon_theory – Thank you!

Sometimes it really feels as though if you change the routine just a little bit things go spinning out of control. Side effects from one medicine, change the timing of something and everything falls to pieces. For a long time I’ve been getting an allergy shot every other week (every second Monday.) I get a bit of ear pressure and roaring for a couple days. I feel like I’ve run a marathon and am worn out for a few days, but the spinning usually doesn’t hit. Well… we had a big snowstorm and I missed my usual time and made it Wednesday instead. It (as expected) hit me harder than usual. I didn’t make it to full vertigo but had a day or two of dizziness (moderate to heavy). I consider the dizziness to be a stage below the vertigo and it hit New Years day. (No alcoholic drinking was going on either.)

But currently that little bit of dizziness is the least of my concerns.

Back in October I had something that I thought might be H1N1. It was upper respiratory and I missed about 4 days or so of work. Then about two weeks later I got what we know was H1N1. That stuck around a bit longer but was just as fun (!) Around that time I had started having some pains in my left hand. Almost like electric shock running out my fingers. But by November both hands were doing it and there were strange achy joints everywhere as well. I mentioned the sharp pains to the doctor at my visit in mid October and he screened for a couple things and said it should get better soon, it may be slow healing but it should be improving.

Well, it improved a slight bit, but it seemed everything was hurting by Thanksgiving. I had a rough week prior trying to get all my work done before Thanksgiving and didn’t get much sleep and chalked it up to fatigue, but by the time the Sunday after Thanksgiving came around I really didn’t feel like charging into work. So, I somewhat glided through the next couple weeks before Christmas putting off until January what I possibly could hoping things got better.

My joints ache. I’m not sure yet if it coincides with my allergy shots (or the Meniere’s symptoms that fluctuate after the shots.) Given that Meniere’s may be autoimmune and Rheumatoid arthritis is as well I’m suspecting there may be a link. Also my Aunt had Rheumatoid arthritis and I understand there is a potential family history connection for that.

I’ve been to a doctor again and he ordered a long list of blood tests including 2 rheumatoid related, thyroid, folate and b12 level tests. But as you can imagine it feels as though things are spinning out of control again. I had been taking B12 for a numb spot on my leg which I since discontinued after determining I started the last bottle of b12 around the time this all started. I’ve had to discontinue the benadryl which I had been taking to try to keep the ear pressure at bay. (I had been taking 50mg each night and 25 or 50mg during the day depending on symptoms.) This has been the first shot cycle for me to coast without that or my allegra. (Although when I’ve had a sudden sneezing fit I broke down and took a 25mg benadryl. That happened twice in the last couple weeks.)

I don’t know quite what to do as I await the results of testing. I’ve already been referred to a rheumatologist, but am told it may be 6-8 weeks before I hear something there.

In searching around the Meniere’s forums I see others asking about connection between RA and allergy shots (which I find interesting) and many other chats about correlation between RA symptoms and allergies acting up. It makes sense as traditionally allergies cause inflammation in the sinus passages why not elsewhere????

Don’t know what to think really, just tired of this persistent aching and sudden pains out of nowhere. It’s not that it hurts so much all the time it’s just that it’s so persistent, unrelenting aching. Sometimes it’s punctuated with a sharper pain in a random joint for what seems no good reason.

(sigh….) I don’t know what to hope for. I don’t know whether to hope they say that I likely have Rheumatoid arthritis or that they don’t see anything that would indicate a problem. Sometimes you just feel like you’re going over the edge and if there’s no tangible proof of something wrong well…. maybe I’m losing my mind. Could my mind be making up all this pain? Anyway, I should hear something as early as tomorrow. Tomorrow is also the time to try and dive back in to work. I’ve tried to get some things ready over the last few days because I punted an awful lot of stuff to January. It’s set to be some month trying to get it all done. I just wonder at what point I have to just quit pushing.

As it is though, we don’t make enough to keep all these doctors employed….. Now I’m going to be adding another one to my “staff”. (sigh).

Here’s hoping things are going better for the readers out there in the ether.

I don’t expect this site to JUST be about my being diagnosed with Meniere’s Disease. I do expect to provide resources that may be of use if you have, or suspect you have Meniere’s disease. I also want to explore some of the things that I’ve learned through all of this. Thanks for visiting, please come back soon!