Over and over again, I’ve read about how exercise can positively impact the intensity of MS fatigue.

Nearly every disease has information that says that those who exercise fair better physically than those who do not exercise. Something about this feels like a cosmic joke to me. Of course those who exercise fair better physically – THEY CAN ALREADY WORK OUT! So – what about those of us who aren’t already working out? How can we make that leap?

You know that heavy protective lead vest that they put on you when you’re getting x-rays at the dentist’s office? For me, at least, MS fatigue feels like wearing a vest like that all over your body. It makes moving take a ton of willpower and energy.

Telling me that running 20 minutes a day on the elliptical machine will make me feel better when walking to the bathroom is a feat is like telling someone with food poisoning that they’ll feel better after they eat something to settle their stomach. It might make sense and even be EXACTLY right — but on some deeper, human level, it sounds like the most ridiculous, difficult thing you could possibly do to yourself.

So, when I hear learned, highly-respected doctors saying that they don’t understand why so many of us with MS gain weight and decrease exercise, it makes me cock my head and think, “Really?”

I think one of the biggest barriers to happiness and positive increase in health for those of us with chronic illness is constantly being bombarded with thoughts of what we CAN’T or shouldn’t do, and not thoughts of what we CAN do.

Granted, it’s the squeaky wheel that gets the grease, and our bodies are squeaking loudly, begging for rest that unfortunately never feels restful. It’s hard to think about what you can do when you can’t stop thinking about what you want to do and are unable to do.

So, how do you get around that? It seems like for many of us, we play the “wait to get better” game. We think to ourselves, “Ok, I feel like crap today, but tomorrow, when I wake up and feel better, I’ll definitely go to the gym.” It seems reasonable. Today we’re letting ourselves rest, and tomorrow, we’ll do what we know we need to do to feel better.

Instead, tomorrow comes, and we feel the same or we feel a little better or a little worse — but no matter what, we know that we have to take things moment to moment. So if we feel better, we work out – and then are *done* for the rest of the day. Heck, we’re out of spoons! If we feel worse, we “take off” another day, and if we feel the same, we hem and haw over whether or not to work out because we’re afraid of making ourselves feel worse today or tomorrow by using all our spoons.

We’re so filled with sadness and anxiety over what to do that our fatigue just makes it that much harder to make decisions. We forget that *very* little things matter and can make a *huge* impact.

For me, my dog makes all the difference. Every day, I try to walk past one more house before I come home. Some days, I can only make it 5 or 6 houses. Other days, I can take the whole block. Some days, like today, I can’t take him out at all and have to get Adam to do it.

For those who can’t walk or who are couch or bed-ridden, there are still ways to get exercise. Even better, you can exercise only during the commercials, and still get the benefits of exercise.

The objective of these exercises is to stop muscle atrophy, tone, and strengthen. It is *not* to raise your body temperature (which can be a huge problem for those of us with MS), and it is *not* to get your heart rate up. It’s to remind you what your body can do and make you feel more capable on any given day.

The easiest exercise that I’ve found is to sit on a stability ball

when watching TV or being on the computer. Assuming that you have good posture, this will strengthen your back, abs, and help with stability.

The other day, I was looking at the Listerine website trying to find coupons when I noticed that they had 12 routines by Denise Austin that show you how to work out while watching TV. You may need to register, but it’s free and I’m sure we all have our spam accounts.

I also really like Pilates. There are tons of Pilates exercises that you can do in bed – things as simple as leg lifts.

Other things that you can do:

• Sit ups in bed or on the floor
• Lift 3-5 pound weights
• Put on some 1 or 2 pound leg weights (or not!) and just kick your legs like a kid in a booster seat
• Just stretch! Stretching has its own benefits.
• There are also programs like Sit and Be Fit: Balance and Fall Prevention Workout and Easy Sitting Pilates Non Aerobic Non Impact Strength, Rehab & Physical Therapy Exercises that are less strenuous, very effective and that you can mute and do while playing your favorite music.

Sure, it kind of stinks to have your workout labeled as for “seniors” or “the elderly,” but we take as many pills and get the same looks from people, so why not take advantage of something made for people like us? Who knows – maybe one of these days me and some friends will make a video for people like us – in our mid-20’s and disabled.

Until then, I’m going to take baby steps towards lessening my fatigue and feeling good about myself. I hope you do too. 🙂

Recently, a friend of mine sent me an email with this story. It resonated so strongly for me that I felt compelled to share it with you all. It makes a very good point – especially with the fact that you can’t know, from day to day, how much you can or can’t accomplish.

THE SPOON THEORY
by Christine Miserandino
http://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”.
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For more on The Spoon Theory, spoon merchandise, and other pearls of wisdom, visit But You Don’t Look Sick.