Lupus Warriors know the challenges of managing energy carefully. Explaining the delicate balance to others can be difficult, but not impossible. The Spoon Theory is a useful strategy
A few years ago, Christine Miserandino wrote a post on the blog “But you Don’t Look Sick” called “The Spoon Theory”. Using spoons from a diner, she explained to a close friend what it’s like to have lupus or other chronic illnesses. You can read the post for yourself here.
Let’s dive into the key takeaways of the spoon theory of energy management:
- You start out with only so many “spoons” per day, and have to manage them carefully.
- It’s the little things that cost spoons, like standing up, reaching, picking out clothes, and so on that really drain the day. Many people, even people who understand the idea of limited energy, don’t realize that these little things cost spoons at all.
- Some activities and sub-activities cost a good amount of spoons, but are so necessary that people with lupus have to do them anyway and base other activities around them.
- Using more spoons than what you have means that you are borrowing against your spoons the next day and your health.
Note: If the terminology of “spoon”s is throwing you off, try thinking of them as “energy points” or something similar. Coins, puzzle pieces, or pieces from a sheet of paper may work too — whatever works for you and your friends.
Tips for Managing Energy
#Lupuswarriors are in the trenches every day, trying to manage their energy and take care of yourself and others. You have to be both warriors, fighting through the day, and generals, planning the whole campaign along with your lupus treatment team. It’s not easy, but you can do it – you do it every day.
A lot of how you manage lupus and your energy levels is unique to you, and each #Lupuswarrior has their own battle strategies. There are a few basic things that you can do, however, to help maximize your spoons.
Take Medications as Prescribed
Lupus medications come with a variety of unpleasant side effects and can seem like they aren’t worth the hassle. Some of these side effects can even cost you spoons. However, the prescriptions that make up a lupus treatment plan can be crucial to decrease organ involvement and maintain long-term health. Not taking medications will lead to less spoons in the future, which means fewer spoons to use on things that you need to do, and more flare ups.
Don’t Skip Meals
Your body needs energy, and many lupus medications need to be taken with food. However, nausea, pain, fatigue, and the gastointestinal problems that can come with lupus may get in the way of your daily meals. You may be tempted to skip a meal, but you shouldn’t – you will be paying for it later. Keep simple foods on hand like soups and small snacks, and try to keep some energy available to eat.
Take Vitamins and Minerals
Eating is important, but just as important is making sure that you eat right. Giving your body all the nutrition it needs (and avoiding foods such as garlic that can lead to flares) is important to maximizing your health and energy. However, #Lupuswarriors can find it difficult to eat a full set of nutritionally balanced meals. Taking multivitamins, calcium tablets, and vitamin D supplements can ensure that you get what you need even when you don’t have the spoons for eating more than the basics.
Don’t Overdo It
When you’re having a good day, it’s tempting to try and take on the world. Symptoms come and go, or medications take effect. Or, you find a great new strategy that makes you feel like you can finally do all of the things on your to-do list. Remember to take things one step at a time. It’s not easy to hold yourself back, but if you do too much at once, you could set yourself back. Be patient, take breaks, and go easy on yourself – you’ll get to where you want to go if you pace yourself.
#Lupuswarriors are also generals. Plan out your day as if you were fighting a war – what do you have to do that day? What do you want to do today? How are you feeling? What’s the weather like? How much do you think you can do today? When can you take breaks? Which tasks truly must be accomplished, and what can wait until tomorrow? The answer to each of these questions will be different for each person with lupus day-to-day, and how you plan this out may take on different forms. Try a flowchart or a scheduler for easy guidance, and keep an eye on your condition throughout the day to change the plan as needed.
Let Other People Help
Delegation is an important part of any #Lupuswarriors arsenal. Learning to ask for help is an important part of your care journey. If you need something to get done, but you don’t have the energy to do it in whole, do what you can and have someone else do part of it for you. Or all of it. The key to getting support is asking.
Taking Care of You
Most of all, though, have reasonable expectations for yourself, get through your day, and do what you need to do.
Reading blogs and posts by other people with lupus and other chronic illnesses can help keep things in perspective and offers a morale boost.
The But You Don’t Look Sick blog has inspiring and insightful posts by guest posters with many different chronic diseases. “Spooniechat” is a twitter chat for people with chronic illnesses, and is a great place to share spoon-conserving advice.
If you want to learn more about fatigue and managing your energy with lupus, our article here discusses it in-depth.