working with lupus – LupusCorner https://lupuscorner.com Health Info on Lupus Symptoms, Treatments & Research Tue, 12 Sep 2023 20:54:38 +0000 en-US hourly 1 https://wordpress.org/?v=6.2.4 https://lupuscorner.com/wp-content/uploads/2019/07/cropped-lupuscorner-new-profLogo-nobg-32x32.png working with lupus – LupusCorner https://lupuscorner.com 32 32 Managing Energy, The Spoon Theory, and Lupus https://lupuscorner.com/spoons-manage-energy-lupus/ https://lupuscorner.com/spoons-manage-energy-lupus/#comments Mon, 11 Sep 2023 08:02:00 +0000 https://lupus-appli-1kjf77zfuvjpc-635402343.us-east-1.elb.amazonaws.com/?p=2755 The post Managing Energy, The Spoon Theory, and Lupus appeared first on LupusCorner.

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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.

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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.

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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.

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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.

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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.

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Job Searching, Work, and Lupus https://lupuscorner.com/job-searching-lupus/ https://lupuscorner.com/job-searching-lupus/#respond Tue, 27 Feb 2018 14:08:46 +0000 https://lupus-appli-1kjf77zfuvjpc-635402343.us-east-1.elb.amazonaws.com/?p=2373 The post Job Searching, Work, and Lupus appeared first on LupusCorner.

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Dealing with job searching AND lupus can seem overwhelming and scary. With the right information and some practical tips, the process might not be that arduous. Continue reading to learn about overcoming job searching lupus challenges.

Job searching is already a time-consuming process that requires attention, focus, and perseverance. It’s extremely common to not hear back from positions—which is never encouraging. But, what if a really great organization shows interest? For a #LupusWarrior, prepping for the interview could be only one of the unnerving aspects of the job application process.

The complexities of having lupus aren’t reflected in many interview processes or guides. As if preparing for an interview isn’t enough, #LupusWarriors should also consider their legal rights and best practices for the advocating for their health while the job searching.

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Job Applications and Lupus

Job applications might pose a question about physical capabilities. How does a #LupusWarrior respond when generally it is a yes or no question? The nuances of having lupus are not appreciated in job applications. Many No matter how strong or hardworking a person with lupus is, a flare can still take them out of commission.

In the United States, individuals’ health histories are protected under HIPAA. The Health Insurance Portability and Accountability Act of 1996 basically protects people from having to share their medical records with any institution or organization. An employer does not have the right to ask a medical professional without the employee’s consent to see health documents.

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Take our short survey and share your story.

It is extremely rare for applications to ask applicants to hand over intimate knowledge of their health (except for some positions with the government). In the later stages of applications, jobs that involve safety risks for the worker or others will most likely ask for a physical and health clearance from a medical professional.

Although many applications which require medical clearance thoroughly consider permission on a case-by-case basis, it’s important to understand the medical professional’s concerns and objective perspective. Work with them and don’t get frustrated.

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What’s the Best Protocol?

Honesty is the best policy. By law, employers are required to make accommodations for their employees. Individuals are protected under the American with Disabilities Act and Equal Employment Opportunities Commission to not be discriminated against for their health status and/or disability.

That does not mean, though, that applicants and employees have to say anything about their health—especially if it’s not asked. If a #LupusWarrior is buying into a group insurance policy, it’s possible that individual will have to divulge they have a pre-existing condition to the insurance company. That information—especially with large organizations—might make it to the human resources department. HR representatives absolutely must keep this information confidential.

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Disability As an Alternative and Re-Entering the Workforce

Working may not be an option for everybody with lupus. If the medical state is severe, any #LupusWarrior between the ages of 18-64 can apply for disability. This means that they must not work, though.

If #LupusWarriors decide to re-enter the workforce, the Ticket to Work Program sets an individual on a program with an advocate to find a job. The advocate can also accompany a person to their place of work and support them during the re-entry phase.

Your Rights, Laws, and Worries

All in all, there are laws and programs to help #LupusWarriors stay private, excel in the workforce, and keep their bodies healthy. Most employers want people who can communicate clearly, be positive, and understand the commercial activities within the organization. So, be honest, positive, and upfront (even to yourself) of what you can bring to the table and how employers can give support.

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