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.

Plan Ahead

#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.

What is the Fatigue Severity Scale (FSS)?

The goal of the Fatigue Severity Scale is to ascertain the level of fatigue felt by a person in the last week. Because of this, fatigue scores may change over time — and they likely will for a person struggling with fatigue as a symptom of lupus.

The Fatigue Severity Scale is a 9 statement scale. A 7-step, Likert scale is used to rate each response with higher numbers representing stronger agreement by the respondent.

Calculate the scale score by averaging the responses to the questions.

 

Sounds confusing… What’s it look like?

Yup. This is one of those where it’s easier just to see it.

 

Instructions

• Consider the past week when answering questions
• Choose only one answer for each question
• 1 = Strongly Disagree; 7 = Strongly Agree

 

 

How can I take the Fatigue Severity Scale (FSS)?

• Use the LupusCorner Facebook bot!
  • By using the LupusCorner bot, you can answer the 9 questions in under a minute and get your score automatically. Additionally, we can save your responses and scores for you and provide an export of the data so you can track your fatigue over time to share with your clinicians. And, we can give you reminders so you keep tracking your fatigue!
• Use pen and paper (here’s a PDF of the FSS)

Establishing a fatigue baseline

Previous studies have used the FSS in an attempt to better understand fatigue and lupus disease activity. The FSS is scored from 1 to 7; 1 is low fatigue and 7 is high fatigue. One of these studies published in 1999 found high rates of fatigue as compared to healthy subjects.

Average Lupus FSS Value: 6.08 (standard deviation: 2.7)

Healthy Participant FSS Value: 2.3 (standard deviation: 0.7)

It should be noted that this study had 81 participants. 76 of the 81 were women. 58 (72%) of the participants were white. As we did not gather any demographic information with our poll, we are not able to make any evaluations about the impact of sex and race on fatigue.

Lupus fatigue in the non-winter months

With an established comparison point, we looked at the data that was not recorded during the winter months (from December 1, 2016 to February 28). In total, there were 440 completed and valid FSS scores.

Lupus fatigue in the winter months

To compare to the data above, we looked at the FSS scores from all months not deemed to be the winter months above. Responses were available from November 2016, March 2017 – May 2017.

Over 350 people have taken the FSS scale. Here is how the results look:

Note: the scale consists of 9 questions rated from 1 – 7 (Strongly Disagree to Strongly Agree). Final score is calculated by taking the average of all responses. If any responses in a given run were invalid (e.g., greater than 7, contained words), the entire response was disqualified.

Average score: 6.04 / 7

Median: 6.33 / 7

Lupus Fatigue Severity Scale (FSS) Results

This is a box and whisker plot is an easy way to visualize the responses that we received. The edges of the boxes highlight the quartiles, with the line between the boxes being the median. It shows where the majority of the responses fell. The whiskers show variability outside of the upper and lower quartiles.

So, how much lupus fatigue are the respondents feeling?

Hmm it does seem like quite a bit. The average scores were relatively high, considering that the Veteran’s Affairs office had noted that an average score of a person with lupus is 4.6.

How could this be? As the respondents have participated voluntarily, it is very possible, even likely, that the people most likely to respond were prone to rating their fatigue at a high level because they currently were experiencing higher fatigue. That is to say, people feeling high levels of fatigue were more likely to read the article and take the scale. It is also possible that the VA’s number is too low.

How can we tell? Be sure to continue to take the FSS scale each week an record exercise, medication habits, foods eaten, and other elements that you may think are impacting your fatigue.

 

The easiest way to take the FSS? Visit us on Facebook and us a message that says: FSS

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