We need water, and quite a bit of it: According to the Mayo Clinic, we need approximately 2.7 liters (for women) to 3.7 liters (for men.) This comes out to about 11.5 cups and 15.5 cups respectively, though it’s a good idea to overshoot this measurement a bit. 

Water is a special molecule that is vital for all life on the planet. This is because it is a unique molecule which has properties that enable many chemical reactions to happen. It also is handy for carrying out toxins, protecting and lubricating joints, and cushioning certain tissues and organs. Humans are about 50% – 70% water, and we are constantly taking in and putting out water, in the form of urine and sweat and even just in our breath. It enables chemical reactions needed for life, cools us down, and transports oxygen and other blood products throughout the body. This is because we lose water whenever we go to the bathroom, sweat, and even breathe.

When a person is properly hydrated, everything in the body just works better. The brain is more efficient, and emotions are more stable. Digestion runs a little smoother. People who drink enough water have more energy and, since water provides a sense of fullness in between meals, it can help with weight management by preventing snacking. It lubricates the joints, reducing joint pain and keeps the body cool. Having adequate levels of water also helps with blood pressure and heart health and, because of this, the kidneys are also able to function better. This helps to avoid kidney stones and allows the kidneys to flush out toxins more efficiently. 

Systemic lupus erythematosus effects all organs in the body (and outside of it, in the case of skin) – and so does water. This means that, for people with lupus, all the benefits of staying hydrated can be very welcome.

Lupus and Dehydration

Dehydration is bad for everyone, but people with lupus are especially vulnerable to the symptoms.. Aside from feeling thirsty, there are other signs of dehydration, including:

• Dark colored urine
• Dry mouth
• Dry eyes 
• Fatigue or sleepiness
• Headaches 
• Confusion
• Dizziness or lightheadedness

At serious levels of dehydration, people will produce little to no urine, sweat, or tears. This is very severe and requires extreme treatment. Don’t get to this point.

People with lupus have to keep an eye on their hydration more than most, especially if they have kidney trouble, as in lupus nephritis. And even more so if they also have Sjogren’s syndrome, an autoimmune disease that affects the glands that produce saliva, mucous, and tears. People with Sjogrens syndrome need to drink more water to make up for their decreased production, reduce their symptoms, and avoid dehydration. You can read more about Sjogren’s syndrome here. 

Temperature and air quality can also contribute to dehydration. People with lupus are particularly sensitive to cold weather, hot weather, and humidity, which all effect how the body loses or holds water. Heat causes more water to be lost through sweat and breathing as the body tries to cool itself.  Humid weather such as hot and muggy summer days can lead to overheating, which can trigger flares.

For people with lupus specifically, however, proper hydration can reduce inflammation by encouraging a healthier immune system. Hydration also keeps the kidneys healthy, reducing symptoms and the risk of kidney damage. It also improves mouth and tooth health, which are common issues for people with lupus. You can read more about tooth decay and lupus here. 

People with lupus have to keep an eye on their hydration more than most, especially if they have kidney trouble, as in lupus nephritis. And even more so if they also have Sjogren’s syndrome, an autoimmune disease that affects the glands that produce saliva, mucous, and tears. People with Sjogrens syndrome need to drink more water to make up for their decreased production, reduce their symptoms, and avoid dehydration. You can read more about Sjogren’s syndrome here. 

Temperature and air quality can also contribute to dehydration. People with lupus are particularly sensitive to cold weather, hot weather, and humidity, which all effect how the body loses or holds water. Heat causes more water to be lost through sweat and breathing as the body tries to cool itself.  Humid weather such as hot and muggy summer days can lead to overheating, which can trigger flares.

For people with lupus specifically, however, proper hydration can reduce inflammation by encouraging a healthier immune system. Hydration also keeps the kidneys healthy, reducing symptoms and the risk of kidney damage. It also improves mouth and tooth health, which are common issues for people with lupus. You can read more about tooth decay and lupus here. 

Tips and Tricks to Staying Hydrated

Drinking plain water, without additives, is generally considered to be the best. If there is safe tap water, then that water is just as good as bottled water. Juices, milk, and herbal teas are second best, though lupuswarriors should watch out for sugar intake. Sugar can exacerbate inflammation and is just something to be careful about in general.  Keep a water bottle with you and keep refilling it when it gets low. Because the body takes a while to register that it needs water, you should drink from it regularly, even when not thirsty. A common adage is “drink 8 cups of water per day,” and if that helps you stay hydrated, then go for it. Drink on a schedule if that helps.

If plain or cold water is not working for you, warm water or tea might be what you need. You can also get a lot of water from your food, especially fruits and vegetables. These are mostly water and will also provide electrolytes and other nutrients. Including these in your diet will help with hydration and overall health. Read more about diets and lupus here. Caffeinated beverages, including green tea, do provide some water, though they can cause jitteriness and encourage urination. 

If you have been exercising and sweating a lot, or are having trouble quenching your thirst, then electrolyte-containing beverages such as sports drinks can help. Electrolytes are minerals that are dissolved in the fluids of your body. They are important for many life functions and include sodium, calcium, potassium, chlorine, phosphate, and magnesium. When kept in balance with each other in the body, alongside water, electrolytes keep the organs and bloodstream healthy. The levels in the body are managed by the kidneys and skin, as well as by one’s diet.

Because they help the body hold onto and better use water, electrolytes help quench the sensation of thirst and maintain a healthy level of hydration. However, sports drinks also often contain sugars, salts, and caffeine that you can’t control. These can have negative effects on one’s health, especially for people with lupus.

However, there are easier, healthier, (and cheaper) ways to make an electrolyte-rich beverage. Vinegar diluted in water with a small amount of sugar is a simple recipe that is easily controlled and effective. Other acidic fruits, such as lemons or limes, also provide electrolytes and add flavor to water. These fruit-based options are acidic, however, so lupuswarriors with tooth or GI problems should be careful. However, they also contain vitamin C, which is an antioxidant that plays a large role in how the body heals itself. Read more about vitamin C and lupus here. 

Alcohol is very bad at hydrating. In fact, part of the cause of hangovers is from dehydration! What water it provides is mostly urinated out as the body tries to flush the alcohol from the system. This is why many hangover remedies involve electrolytes – you are quickly rehydrating the body!

Changing one’s environment can help, too: stay cool on hot days and use humidifiers on cool days. Humidifiers can help prevent drying out, which can help avoid dehydration, but that is not the same as a  however, so a humidifier is better than a hot mucky day for people with lupus.

Fluid Retention and Lupus

Many people with lupus have issues with water retention and swelling, particularly in their abdomens, legs, and ankles. When electrolytes are out of balance due to inflammation or kidney damage, then the body starts to retain water to try to maintain a balance. This causes swelling and can be embarrassing and uncomfortable. Water retention can also be caused by antimalarial medications such as Plaquenil, which are often used in lupus. Steroidal medications such as prednisone also cause fluid retention in the body.  

The answer is to drink more water and adjust the diet – in particular focusing on reducing salt and increasing Vitamin B6, magnesium, and potassium intake. The medications may make it difficult for the body to manage its water balance, but remaining hydrated and reducing the electrolytes in the bloodstream makes it less likely to hold onto its water. Non-steroidal anti-inflammatory medications (NSAIDs) can also help with swelling caused by water retention.

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.

Systemic Lupus Erythematosus, SLE is a lifetime struggle and ageing adds new complications to the mix. Aging makes the body’s systems more vulnerable to damage and less able to heal from that damage. This can make many of the usual lifestyle changes used to control lupus, including diet, a lot more taxing for people with lupus. The immune system also becomes less effective across the board with age, and this can have unusual effects on the symptoms of lupus. 

Age can also increase the risk of depression, loneliness, and isolation for people with lupus. As it becomes more and more difficult to ‘get out there’ and do activities with others, mental health can easily deteriorate. Add in the fears that come with aging, and depression and loneliness are common issues for older people with lupus. 

Medications and being proactive about keeping in contact, both on the patient’s end and on their friends and family’s end, becomes increasingly important with age. So, what exactly is happening in the body with age?

What is Late Onset SLE

When talking about age and SLE, it is important to discuss late-onset SLE. SLE most commonly appears in women of childbearing age (13-50 years of age.) However, 3-18% of SLE occurrs in people older than 50, and it seems to be a completely different form of lupus. Late-onset SLE generally has milder symptoms, including lower rates of lupus nephritis and kidney involvement.

In an analysis of immunogenic markers in 150 patients with SLE, there were no clinical differences between male and female patients, and young and old patients. On the autoimmune antibody level, they are the same. The symptoms, however, manifest differently, with males having more intense symptoms and later diagnosis and older patients having more comorbidities. 

Aside from the later age and different symptom profile, late-onset SLE is affected similarly by ageing to typical SLE.

Ageing and the Immune System

The process of ageing is, essentially, the parts of the body reaching their limit. Like any other machine, parts wear out with use, but unlike machines, we can’t generally replace those parts. As a result, many biological processes become messier, less efficient, or start to interfere with other processes. Organs become more fragile, from skin to bone, and that causes problems on its own. This can be especially problematic for people with lupus.

The immune system is directly affected by ageing. The immune system loses some of its ability to coordinate itself with cell-to-cell signals, leaving it vulnerable to attack by diseases. It also becomes less able to stop autoimmune cells from being produced.

The age-related changes to the immune system effect how it functions occur at the cellular level. Older people have slightly more types of memory B cells, the B cells that act as the immune system’s reference for pathogens it has experienced before. However, they have fewer numbers of these cells, which already do not react very quickly or efficiently to threats on their own. So, while the body does remember the many pathogens it has encountered, it is less likely to stir these remembered responses into action – and may do so for the wrong reasons. It also becomes harder for the immune system to create a new ‘entry’ into the immune system’s database. They don’t gain immunity as effectively to new diseases.

Monocytes in older people behave differently than in younger people. Some of these monocytes turn into dendritic cells, the trigger cells of the immune system that produce compounds that turn up the immune response. These are partially active in older individuals and more likely to react to autoantigens – markers from one’s own cells – than those found in younger people. Monocytes also turn into macrophages, which are more sensitive to certain inflammatory signaling molecules in older people. These two factors together mean that the immune system can go out of control much more easily in elderly patients.

Ageing also causes the mechanisms that prevent autoantibodies, the B and T cells that target the body’s own cells, from being formed to become sloppy and inefficient. More of these self-attackers get through the filter.

The actual effect that ageing has on inflammation, and thus the symptoms of lupus, is a bit more complicated. Some people experience an immune system that reacts more than it should, aggressively causing flares. Others can’t get their immune system to fight off a cold properly. 

Overall, the effects of ageing on the disease course of lupus itself are actually fairly even – Despite age being linked to increased vulnerability, an analysis of 489 SLE patients found that, overall, the intensity of lupus symptoms does not increase with age. Comorbidities like cognitive issues, joint weakness, and fatigue do get worse, though, as both age and lupus cause trouble in the body.

Symptoms of SLE and Ageing

Aging’s natural effects on the immune system can be very similar in some ways to SLE, effectively giving people with lupus a “double dose” of autoimmune activity. Ageing bodies can cause already existing symptoms to become more intense, and previously ignorable symptoms to emerge. Long term SLE can cause complications of SLE to build up, leading to chronic osteoporosis, bone death, heart disease, and other issues.

The neuropsychiatric symptoms of lupus in particular can get exacerbated by age, in particular. This includes brain fog, challenges with eyesight or hearing, anxiety, depression, headaches, and insomnia are also exacerbated. You can read more about them here. 

SLE causes memory problems and increases the risks of dementia developing at a later date – in fact, people with lupus are 51% more likely to develop dementia. In a study looking at 4886 people with lupus in Israel, 1.65% of people with lupus developed dementia as opposed to 0.51% of the control group. People with lupus and their families should keep an eye out for the symptoms as they age.

People with lupus are also at an increased risk of developing cardiovascular disease and stroke, which can be life threatening. NSAIDs, a common medication for both heart disease and lupus, have risks and side effects, including gastrointestinal bleeding. 

Dealing with Aging and SLE

Ageing is a loss of equilibrium between the body and the immune system, and between the appropriate inflammatory response and the checks and balances that the immune system has to keep it under control. Everything starts to fall apart and become imbalanced. Taking time for self-care, finding ways to socialize, and using positive affirmations can be valuable tools for maintaining good mental health. 

NSAIDs such as aspirin can become very important medications for older patients, since they both reduce inflammation and can prevent clotting from occurring due to atherosclerosis. 

In terms of diet, Mediterranian-style diets are easy to follow for most people with dietary restrictions, and are associated with long life and good health. The autoimmune protocol diet is also not bad for older people with lupus, as many of the anti-inflammatory foods on the list are recommended for the elderly as well.

The microbiomes of elderly people naturally change with age, and may be linked to the health changes that they also experience. Probiotics are very good for older people with lupus, since it can help keep their microbiomes healthy.

Systemic lupus erythematosus is an autoimmune disease that affects organs throughout the body, including the joints, nervous system, and skin. Many symptoms of lupus are not outwardly visible, even though they can be heavily debilitating. To the point where even basic activities can feel monumentally difficult. Unfortunately, this means that many friends and family members find it difficult to understand what a person with lupus is going through. 

They can often say hurtful things without meaning to or just lack empathy for a situation that they just cannot understand. If you want a handy guide for what your friends should never say to you, head over here. 

You are not a ‘flake’ or a ‘hypochondriac’ – you have lupus, a complicated autoimmune disease that legitimately makes things difficult. You and your symptoms and experience are valid. If you want some help explaining the limited energy capacity frequently experienced by people with chronic illnesses such as lupus, read about Spoon Theory, here. 

Society expects people to have time and energy to maintain friendships that people with lupus just don’t have available all the time. Lupus can be unpredictable and many people who do not have chronic illnesses have trouble understanding the needs of people with lupus. As a result, they drift away, which is devastating, contributing to depression, which can isolate a person with lupus even further. There are a few rays of hope that could break this cycle, however.

There are a lot of things that a person with lupus can’t do, but you already know that. Let’s aim for the positive instead – to “find your own space in this new world” as this article in ABC News puts it. So, here are a few things that you can do with your friends and family to keep the relationships rolling a little more consistently.

The Most Important Rule: Be Flexible!

Lupus is tricky. Each person with lupus has a unique set of symptoms and challenges that they deal with. No fun activity is a one-size-fits all, and it won’t be the perfect choice all of the time. There are good days when any activity is possible. And then there are days for some people with neurological symptoms of lupus might find reading, watching tv shows, talking on the phone, or getting out of bed fatiguing or near impossible while they are experiencing a flare. Flares and symptoms can also be difficult to predict, making concrete, inflexible plans difficult to make.

That is why it is important to have multiple ways for a person with lupus to interact with an activity or with their friends if they can’t attend that day. Backup plans are important, since sometimes flares will happen without warning. Having a computer-related option like a zoom call or a video stream can be an alternative to in-person time. You might need to have a quiet ‘recap’ hangout later or bring back nice souvenirs if that isn’t feasible. 

All of the activities that we will talk about here make good backup plans to other activities, but even these options will benefit from everyone involved understanding that sometimes plans have to change.

Everyone should contribute to backup plans to make sure that they work for everyone.

Stay in Contact

A fun activity to do with friends is to have a regular call session with one or more of them. Organized group check-ins like a phone tree can be both fun and fill an important role in your life. 

You can do so in your home with whatever you need to stay comfortable. This way, you can account for some variability of symptoms and are more likely to be able to keep the appointment.  Having it be an appointment at a regular time keeps you in regular contact and is fun for everyone. Since it’s so difficult to make and keep friends in adulthood, even friends who aren’t dealing with chronic illness will find this appealing. If there are multiple people in the friend group with health issues, then its even better because the whole group can work together to make sure that no one is left lonely and no one is left behind or forgotten. This works even better if it is a local lupus support group.

Exercise Together

Anyone who has made an exercise-related new year’s resolution knows that it can be difficult to keep up an exercise routine. For people with lupus, regular light or low-impact exercise can have huge benefits. It’s about consistency and doing the exercise regularly, not the amount of exercise that you do during your session. But it can be even harder to keep up a consistent routine due to pain and fatigue. It’s important, but it can be easy to be discouraged. 

Having a friend do the exercise routines with you can make a huge difference. Sharing your exercise experience with another person is very motivating and beneficial for your health! Not only are you doing something together, but you have something to talk about and commiserate with, someone to have an after-exercise snack with, and someone to help if things get too difficult – either by motivation or physical help. It keeps you accountable and this is an activity that can be done at someone’s home, at a gym as a part of a class, or as a walk around the neighborhood – and it benefits everyone’s health, a win-win. 

Make Food Together

Eating together with friends has been a bonding activity since the dawn of human civilization… so meal prep is another win-win activity for people with lupus and their friends. It turns out, the diets that are good for lupus are also very healthy and balanced overall. It can be difficult to prepare meals for the week, and even more so for people with lupus, but working together makes it a lot easier. 

It can be as simple as just hanging out and eating healthy together. Or one person can bring the ingredients – especially if they have access to a good source of whole foods, while the other prepares meals for the week and stores them in the freezer and refrigerator. Or one person can just be moral support and good company. 

Regular potlucks can also be a good way to get together with friends. There are a lot of ways to turn food into a low-impact way to spend time with friends.

Playing Games Online

Online video games can be amazing for people who have trouble getting together in person. Many video games offer something like an outdoor adventure experience along with entertainment. Even the simulation of the outdoors can have psychological benefits. 

Not all online games are video games – board games, card games, and other tabletop games can be played online with group chats, online calls, and even creative emulators like Roll 20 and Tabletop Simulator. The wonderful thing about online gaming is that not only can you have some flexibility around your availability, but if you need to stop and bow out, it’s as simple as saying goodbye and disconnecting. No driving needed!

Going Out, But at a Lighter Time

Sometimes, you are up for going outside, maybe to a museum or park, with your friends… but not necessarily doing something major with too many people around. Sometimes, finding a less popular time when a place will be less crowded and fatiguing will make a huge difference. 

The same goes for scheduling time at a spa or even a doctor’s appointment. Timing can be all that  you need to make going out with a friend doable.

A Lupus Warrior’s Takeaway

There are a lot of misunderstandings that hover around chronic illnesses such as lupus. and sometimes these misunderstandings get in the way of friendships – but there’s always a way around it. These ideas are just the start – start a conversation with your friends to find something that works for you all.

Read more here about the things that you can do with lupus.

What is self-management?

Self-management is the continuous engagement in your illness, by actively participating in the understanding of the illness, the adherence to treatment plans, and the honest communication of symptoms to your healthcare team.

In an article in Healio, Linda Grinnell-Merrick, MS, NP-BC, the lead nurse practitioner in the division of allergy, immunology and rheumatology at the University of Rochester Medical Center described it thusly: “Self-management in lupus is a combination of information, guidance and encouragement.” She went on to explain that self-management of lupus is a team effort. Healthcare professionals and educators have to reach out to people with lupus, provide resources, and work together to figure out the best outcome.

However, this is easier said than done. Professionals are hard-working, stressed, and sleep deprived, and each person with lupus is unique. This means both unique strengths – but also unique challenges that make self-management difficult. Some of these challenges could even be considered outright barriers!

Barriers to Self-Management of Lupus

Lupus self-management is by no means a simple task! A person’s financial, family, housing, and work situation can all interfere with their lupus and self-management. For example:

• The home environment may be stressful, chaotic, or physically difficult to navigate (such as staircases). It may be very difficult to prevent flares, or potentially, to make it out the door to a doctor’s appointment.
• The work environment may be stressful or dangerous. Even when someone is physically and mentally capable of doing their job. They may be exposed to stressful situations or even hazardous chemicals that might increase their risks of flare. Quitting is rarely an option – or desired.
• The neighborhood that a person lives in may not be safe or conducive to walking or exercise.
• A person with lupus might not have the money to afford appropriate care, even with insurance… or, they might not be able to afford to lose time from work. They may need to decide between doctors’ visits, medicine, rent, food, or utilities for the month – and this can get even more complicated when children or family is involved.
• There may be a genetic component to lupus that makes families more susceptible to the disease or to other autoimmune diseases. If multiple other members of the family have a chronic illness, figuring out who has the time and energy to assist with certain medical-related tasks.

Sometimes, the medication itself can be a barrier. For example, commonly used corticosteroids cause their own serious and debilitating side effects.

 

Other, more subtle barriers include:

• Less, or no, access to physical or mental health professionals who believe or respect the patient.
• Less convenient or easy access to the appropriate specialized professionals.
• Not having access – or being allergic or sensitive – to fresh and healthy food.
• Being treated poorly overall based on race, gender, or disability status.

How Doctors Can Help?

Health professionals can help people with lupus self-manage through support and education. In fact, about 25% of a physician’s office time is spent educating.

They need to have resources handy or ready to link, and be ready to answer questions and educate people. They need to be able to be aware of the person’s situation and body reactions, and be able to tailor treatment accordingly. The keys to doing this effectively are keeping up to date on research and advances, and communicating effectively with patients and other professionals.

Primarily, health professionals help communicate:

• the symptoms of a flare, and potential flare triggers.
• the side effects of medications and possible interactions with other treatments.
• the components of a healthy lifestyle including:
  • diet
  • exercise
  • limiting smoking and alcohol consumption.
• Family planning and pregnancy resources, an often-neglected aspect of lifestyle treatment.
• What each professional on their team can do, and what they are knowledgeable about.

A great way to do this is to utilize social media. It allows them to communicate in real time and link high-quality resources. Embracing social media can be a great way for professionals and lupus patients to connect (though, they should always be careful, read more about social media and lupus here!)

Professionals also help by believing people with lupus and taking them seriously. Modern medicine is about treating people with respect – a patient advocate can help with this, though you can also be your own advocate with preparation. You can read more about it, here.

A Lupus Warrior’s Takeaway

A big part of self-management is belief in yourself – it’s a self-fulfilling prophesy! Thus, when you are confident in your ability to take care of yourself, it actually does get easier. This is called “Self-efficacy theory,” and it has been researched. So, find ways to make yourself confident. Create plans, get the education that you need, ask questions and advocate for yourself… and don’t let other people drag you down. When you set yourself up to succeed, a lot of barriers go down.

According to a survey by the Lupus Foundation of America, 57% of respondents felt unsatisfied with their health professionals. They did not provide enough information to their patients. Overall, people find health professionals not as accessible and harder to communicate with.

There are three ways to handle this:

1. Encourage healthcare professionals to reach out and communicate better (and give them less stressful schedules.)
2. Provide a link to health educators, so that the patient can get focused attention and the relevant resources.
3. Empower patients to be able to find some of these resources on their own.

As a person with lupus, take advantage of the resources that are available to you. Read things thoroughly, and see if you can find videos and classes on the disease. Studies on the self-help resources revealed that self-help resources were tied to improvements in both physical and mental health.

So, where do you find the resources you need to do this? Well, right here is a good start!

Resources for Lupus Warriors

LupusCorner has many informative articles for people with lupus, caregivers, professionals, and the general public. You can check out our full article list here.

Support groups and networking with other people with lupus can be a big help, too – our app has forums and questionnaires that may be valuable to you. Find it here.

Systemic Lupus Erythematosus (SLE) is an autoimmune disorder, which means that it is heavily effected by stress and the general health of the body, including how well you are sleeping. 

Sleep is important to a healthy body and mind, and most experts estimate that, while there is some variety between individuals, the body generally needs about 8 hours of sleep a night. Sleep is immensely important to the body for a variety of reasons:

• It gives your heart a break. While asleep, the heart doesn’t work as hard and is able to rest and repair itself from possible damage. 
• It affects metabolism, in part because sleep is an energy-conserving state and is a great time for the body to digest, process nutrients, and recharge energy and nutrient storage at a time that it won’t immediately be needed.
• The immune system works very well when we are not moving around or being exposed to new pathogens. A lot of the time, the immune system is most active at night. Though this sounds bad for people with lupus, it is actually very helpful. During sleep, important immune system processes may occur that people with lupus need, such as culling the immune system molecules that target the body’s cells.
• It allows the brain and body to clear out waste products and refresh and restore itself. Sleep is a time where the body performs maintenance, including clean up and repair. Lack of sleep can make thinking difficult and inefficient because of a lack of clean up and repair, like fog over the brain.

However, it can be tricky in our society to get enough sleep, and it’s even harder for people with autoimmune diseases such as lupus.

What is Sleep?

What is sleep, exactly? Sleep is a resting state for the body, where the mind goes unconscious, and the body moves only minimally. In most people, sleep usually occurs in a cycle depending on the time of day, typically the night. However, people can retrain their body’s sense of time, also known as the “circadian rhythm,” to accommodate other types of schedules such as night shifts. The brain is the organ that keeps track of time, through both an internal sense of time and the presence of light and darkness. When the body detects that it is its sleeping time, it releases hormones such as melatonin and begins processes in the body that prepare it for sleep and make you feel drowsy. When it’s time to wake up, it starts the process of waking up and promotes alertness. Artificial light, stimulants, and age can warp and erode this internal clock, leading to poorer sleep. 

Sleep problems are common for people with lupus, including narcolepsy and insomnia – both too much and too little sleep! 

Sleep and Lupus

Over half of people with lupus also experience problems with sleeping. Some people with lupus suffer from insomnia, where it is difficult to go to sleep and involves long periods of being tired yet remaining awake. They can also have symptoms of narcolepsy, which is inappropriate sleepiness or tiredness during the day, sleep in inappropriate areas, and even can involve collapsing into sleep without warning.  Insomnia, oversleeping, and narcolepsy can all be caused by lupus. Oversleeping has similar causes because, often, it is a reaction to poor-quality sleep due to a noisy environment, bright lights, and caffeine in the system. Pain from lupus can also disrupt sleep, and even when it’s not enough to fully wake you, it’s still costing you sleep quality.

Autoimmune diseases and lupus experience more sleep issues because pain, as well as inflammation itself attacking the nervous system, gut, or other cells, can disrupt the chemistry and signaling mechanisms of the body, and make it more difficult for the body to sleep. The problem with sleep disruption is that it tends to get worse if left alone, and then becomes more difficult to remedy. Here are some tips and tricks for people with lupus to help them get the sleep that they need.

Many people with lupus experience neurological symptoms of lupus and this can affect sleep in many ways – not the least of which being that the part of the brain that regulates the hormones that control sleep can be damaged. Fatigue is also a neuropsychiatric symptom that can contribute to sleep issues. 

This is not the only way that the neurological symptoms of lupus can affect sleep, but the point is that lupus can make sleep – and the traditional ways to improve your sleep experience – very complicated.

Lack of sleep can increase the sensation of pain, and sleep can be disrupted by pain. Break this cycle and take back your sleep with these tips and tricks!

What is Some Basic Sleep Advice for People with Lupus?

In our previous article on sleep and lupus, we go over the basic advice that you can find anywhere about managing your sleep. You can read that article here. Though this basic sleep advice is great for sleep hygiene, it can be difficult to put these strategies into effect and they don’t work for everyone.

In this article, we will go a bit deeper, since lupus can make these so-called “basics” very complicated indeed. 

The inflammation caused by lupus can cause fatigue (which is primarily a neurological issue,) sleepiness, and problems regulating mood and motivation. Not being able to sleep properly increases stress, which increases inflammation, which can cause more symptoms of lupus. It’s important to get a handle on sleep for a person with lupus, but the situation is much more complicated than just a sleep hygiene or environment issue.

However, these basic steps might be a good place to start.

The Basics

Go to Bed and Wake up at the Same Time.

Going to bed and waking up at the same time will get your body used to a schedule and encourage natural sleep and wake cycles. 

The Problem: Life can be hectic. Sticking to a consistent schedule is difficult, especially if you do not have a ‘traditional’ job. Breaking this schedule to sleep in or stay up on weekends can also disrupt the body’s sleep rhythm that you worked so hard to set, which many people find frustrating. It’s also difficult to wake up and go to bed at the same times if you are having trouble with your sleep schedule in the first place, making it a frustrating cycle that can be tricky to break. 

People also have different ideal schedules, one analysis of a small sample of adolescents participating in a sleep study found that that nearly 50% of people may have bodies that naturally wake up late. When forced to wake up early, people with naturally late sleep schedules often take naps and feel tired and unfocused. They also have more trouble falling asleep. If you are this type of person, it can be difficult to create a schedule that accommodates your and your work needs. This can make creating a consistent schedule that gives you the recommended amount of sleep difficult.

Tips: If you only focus on one part of your sleeping schedule, prioritize trying to get down the time that you go to bed. Once that is set into routine, figuring out a consistent wake time might be easier. 

Limit Light and Noise in your Sleeping Area. 

Bright light (including technology screens) and noise make it difficult to go to sleep, so it makes sense that if you limit the light and the noise, it will be easier to sleep. 

The Problem: However, while this advice seems simple, cutting down noise is sometimes impossible due to the nearby environment, appliance noise, or your personal noise sensitivities. 

Light can also be tricky to limit and limiting light, even in the form of screens, has mixed effects. Many people use their phones as alarms, and often only have time to work or play on their devices late at night. Blocking light from a window might help with sleep, but it also can make it difficult to wake up since light is also the body’s way to detect daytime and a cue for it to wake up.  

Tips: There are many ways to change how light and sound enter your sleeping space. Earplugs, white noise machines, and eye masks are a potential solution for people trying to manage these problems. For technology, there are glasses that filter out blue light (which is responsible for triggering wakefulness-promoting chemicals in the brain) and settings like night mode, which can be very helpful for people who find it inconvenient or difficult to ‘unplug’ or stop looking at screens near bedtime. The do-not-disturb setting on the phone can avoid notifications interrupting sleep at night, though some people find that putting the phone in another room entirely is an even better policy.

Temperature control is a little more manageable. Most homes have some measure of air conditioning or heating, and the use of fans or comforters can help keep the temperature in a range where it feels comfortable. Comfort is also key – a comfortable temperature, mattress and pillow can potentially make a huge difference. Temperature, notably, can also effect pain. Using hot water bottles or strategically placed pillows can potentially make a huge difference to your sleep even if you can’t change other factors in your environment.

Avoid Caffeine

Avoiding caffeine is not bad advice. Caffeine, usually taken in the form of coffee or tea, is a chemical that is able to cross the blood-brain barrier and affects the nervous system. It does not actually increase energy. Instead, it pushes the body’s metabolism and nervous system activity harder, causing it to use more energy, leading to a feeling of increased alertness and a positive, focused mood. 

Whether caffeine is okay for people with lupus appears to be a mixed bag – some people have found that a cup of coffee is exactly what they need to get through the day. Others find that it increases their flares and that it causes fluctuations in their blood pressure. In this case, caffeine in the form of tea, coffee, or other sources can interfere with sleep in a big way.

It is also addictive, as the body develops resistance, meaning that at some point, caffeine is required to feel ‘normal’ and a higher dose will be needed to gain an increased wakefulness effect. Caffeine can keep you from feeling tired or falling asleep. Not taking caffeine 6 hours before bed is a good guideline, but it depends on the concentration of caffeine – some very high-caffeinated substances can affect the system 8 or even 12 hours on! 

The Problem: Many people rely on caffeine to stay awake and alert. It is a habit that is very difficult to quit, especially since the needs of work and life encourage it. Also, as with anything to do with the body and diet, it is much more complicated than just keeping people awake and alert at inappropriate times. Meanwhile, some people find that warm beverages, regardless of caffeine content, put them to sleep.

Caffeine actually can help keep melatonin in the blood because it uses the same enzyme as melatonin to break down. Because of this, there simply isn’t enough enzyme to break down the melatonin. Blood levels of melatonin often rise after taking caffeine, which could be one of the reasons why people sometimes feel tired after drinking coffee.  So, while a rule of thumb, it’s also very body-specific.

Tip: It’s not a bad idea for a person with lupus to try cutting back on caffeine in general. Warm drinks can aid sleep, while herbal teas can assist with wakefulness. It is also possible to change your environment to encourage an alert, positive state. 

Tips and Tricks for Sleep with Lupus

Again, this is the basic advice that you will find everywhere on the internet, in classes, and in therapy. While a person with lupus might be able to use this basic advice, sometimes these strategies are just not attainable, or they don’t work. Sometimes, they aren’t the problem at all. So, what tips and tricks might actually work for a person with lupus struggling with sleep?

Have a Snack before Bed

You are what you eat, and sleeping is no exception. A balanced diet that includes protein and complex carbohydrates, eaten at intervals throughout the day, can help keep your energy balanced throughout the day and prevent rushes and crashes. Small portions may be more manageable for people with lupus, and they can help keep your energy levels stable. A balanced diet can also help rule out or reduce the effects of cardiovascular disease on the body.

Eating before bed can cause indigestion and keep you awake, but the key is to eat small, snack-size portions before bed. Certain kinds of foods either provide nutrients associated with sleep, have carbohydrates that cause a drop in blood sugar (and tiredness,) or make you feel full, calm, or comfortable. 

Foods to Eat

Magnesium and melatonin-rich foods like nuts boost encourage a natural sleep response, in addition, reduce inflammation. Nuts are also known to trigger the production of serotonin, which is important for sleep. Foods rich in vitamin D and fatty acids such as fish also encourage the release of serotonin, making fatty fish such as salmon, tuna, mackerel, and trout very good bedtime snack foods.  

Rice, cereal, or oatmeal all have carbohydrates that quickly enter the bloodstream, causing a ‘crash’- like effect and drowsiness. Though some people with lupus will not want to alter their blood sugar in this way, many people use the ‘crash’ as a way to encourage their bodies to go to sleep and, as the blood sugar equalizes and the grain-based foods digest, the body feels full and nourished and stays asleep, and then wakes up with energy available.

Certain beverages can also be a good idea. Warm milk is a well-known insomnia remedy and it works because of a combination of having a comforting feeling in the mouth and the hormone tryptophan, which is what causes the same pleasant and satiated feeling as a turkey dinner. Tryptophan-rich foods are processed into melatonin in the body. These foods include many fruits and vegetables, including tomatoes, olives, barley, rice, walnuts, and grapes.

Foods to Avoid

Avoid alcohol, and avoid large, spicy, or highly sugary foods. Alcohol can appear to be a sedative, but is not good for people with lupus and its assistance with sleep is debatable at best. People who use alcohol to help them sleep often report poor sleep quality and wake up frequently through the night.

Large meals and spicy foods can cause indigestion or a condition called acid reflux, where acid from the stomach washes up into the esophagus and causes a burning sensation. This is also known as heartburn, and is a common trigger of insomnia. Sugar and caffeine-containing food encourage the body to stay awake, and so should be avoided before bed. You can read more about sugar and lupus here. 

Supplements, Sleep and Lupus

You get most of your melatonin from food. However, some people take melatonin pills to encourage sleepiness. Melatonin is a hormone in the brain that is a part of how you regulate your circadian rhythm – your natural sleep cycle. Previously, people with autoimmune disorders were told that they should not take melatonin supplements, as it could cause an increase in proinflammatory molecules, turning up inflammation and potentially causing a flare. However, more recent research  also seems to imply that melatonin reduces inflammation and the symptoms of autoimmune disease. Melatonin is used in many different body functions, so it’s not surprising that people are seeing contradictions. 

Overall, though, taking melatonin is perfectly fine for people with lupus. Doctors recommend that melatonin tablets be taken with food about 1-2 hours before bedtime. They will cause sleepiness and a ‘pull’ towards sleep, so you should only take them if you intend on going to sleep at that time.

Many people also take supplements to help them sleep, including Valerian root, magnesium, lavender, gingko bilboa, L-theanine, and glycine. Studies have shown that these supplements do have an effect on relaxation and sleep. However, supplements are not harmless. Check with your treatment team to make sure that the supplements don’t interfere with your medications.

Exercise, Relaxation techniques, and lupus

Regular light physical activity can tire out the body and promote proper sleep. If you exercise regularly, at the same time each day, it is also a great way to set your circadian rhythm by giving your body a way to mark the time. Exercise can also make you feel more awake, so many people exercise early in the day, and the benefits last into the night. 

Something better done at night, however, is relaxation techniques. Relaxation techniques like meditation, soothing music, or ASMR can potentially help as well. Try doing relaxing and meditative activities before bed, such as meditation or journaling. That can help the mind and body wind down for bed.

Taking a warm bath or shower before bed can make the body feel relaxed and comfortable. Warm baths can also reduce joint pain. Because of this, people with lupus might find that taking a warm bath will help you sleep a lot better.

Check for Other Issues

Sometimes, problems with sleep, either difficulty sleeping or difficulty waking, can be a sign of a more serious underlying issue. Lupus itself can cause damage to the body that leads to medical complications. For example, damage to the thyroid due to lupus can also be a contributor to daytime sleepiness that won’t be helped by changes in sleep routines. Taking lupus medications regularly will keep lupus symptoms under control, which could benefit to your ability to sleep.

Making sure that you aren’t having trouble breathing while sleeping  may be key. If you snore or have any sort of change in your breathing, that could seriously affect your sleep quality and it might be a symptom of other underlying problems. Dealing with the snoring might be able to help with sleep, and deal with other problems just beneath the surface. A sleep doctor can help with treating possible breathing issues.

Some medications can make you feel sleepy or fatigued – reducing or adjusting the dosage might help with your sleep problems.

Mental Health and Sleep

Poor sleep quality in SLE might not be a symptom of the disease, but from secondary effects of the disease – the burden that SLE puts on your mental health. Between the pain from lupus, neurological symptoms of lupus, and certain steroid medications, depression and anxiety caused by lupus could be a part of why you are having trouble sleeping. 

Depression can make it difficult to sleep properly, either by causing insomnia or oversleeping. When someone is tired, they are more likely to have what is known as a ‘sedentary lifestyle,’ or not to be active in doing exercise. A lack of exercise can lead to lower energy levels and poorer sleep, which only feeds back into the depression feedback loop.

Therapy can help with sleep. Sometimes, even if we are not conscious of it, depression  and anxiety keep us awake or interfere with our sleep. Therapy can help put these monsters to rest, so that you can also get some rest.

If a therapist is unavailable or too expensive, try meditation or positive affirmations. Those can be surprisingly powerful tools to treat mental health.

Anything Else to Help with Sleep?

Sleep medications can help, and are worth a try, but there are a lot of other methods that you can try to improve your sleep that won’t be resisted by the body. 

Also, sometimes you need a nap to get through the day. Naps can cause issues with your sleep cycle, but if done in short bursts at the same time every day, you can become used to it and it will become a part of your sleep schedule.

Figuring out how to manage your sleep schedule can be a game changer for people with lupus. We hope that our tips proved to be useful and gave you a few more options to try.

Headaches are a common symptom of systemic lupus erythematosus (SLE). Previous studies have varied on their expected prevalence, but up to 78% of people with lupus experience headaches. According to a 2006 study, people with lupus are more likely to experience migraines than people with other diffuse connective tissue diseases (DCTD).

These headaches can come in many forms, can be very frequent, and can be very painful. Unfortunately, much remains unknown. It is unclear if headaches in lupus are actually different from headaches in otherwise healthy people, if they actually occur at higher frequencies in people with lupus, or if they require special treatment.

You can read more about migraines, headaches, and lupus, here.

What Causes Headaches?

Anything involving the head can trigger or contribute to a headache. This includes:

• Blood clots, narrowed blood vessels, and thickened blood vessel walls that restrict blood flow to the brain
• Inflammation or infection in the sinuses, empty spaces that produce mucous and drain into the nose.
• Eyestrain
• Muscle tension in the head and neck.
• Problems in the central nervous system, especially the brain, can also lead to headaches. You can read more about the neuropsychiatric symptoms of lupus here.
• Menstruation and menopause can also cause headaches.

SLE causes or leads to many conditions that are known to contribute to headaches. Lupus has been linked to:

• Emotional stress
• Joint pain, including in the jaw and/or neck
• Fatigue
• Dehydration and/or malnutrition
• Inflammation
• Nervous system damage
• Cardiovascular symptoms including high blood pressure or heart disease. (You can read more about lupus and the heart, here.)

Weather, pressure, and temperature sensitivities common in SLE can show up as headaches. People with lupus are also more vulnerable to infections. Certain diseases, such as yellow fever and the flu, can cause headaches, especially if fevers are involved.

Incidentally, Sjorgren’s Syndrome, another autoimmune disease that attacks important glands throughout the body also has headaches as a symptom. It can overlap with SLE and might exacerbate it. Since the diseases both are autoimmune, the idea that the immune system itself might be responsible for the headaches has been explored.

However, it is not currently thought that the autoantibodies that attack the body’s own cells and lead to SLE actually cause headaches. The frequency or severity of headache isn’t linked to these autoantibodies or to how active the disease is, and lupus-specific treatments don’t appear to affect the headaches much, if at all. In fact, many lupus medications have headaches as a side effect, including non-steroidal anti-inflammatories (NSAIDs,) corticosteroids, antimalarials, and anti-hypertension medications. 

Types of Headaches

While there are many different types of headaches, they are typically classified into a few basic types: Primary and Secondary.

Primary headaches are an overload or malfunction in the pain receptors in the head. This overload involves either by changes in chemical activity in the brain, changes in the health of the neurons and blood vessels in the skull, or tension in the muscles of the head and neck. Genetics can predispose people to primary headaches.

Secondary headaches are similar, but the pain is a symptom of some other issue in the body.

Headaches in SLE can be of either of these headache types. These two types can be further broken down into:

Tension headache

Tension headaches generally take the form of a gradually increasing pain, usually felt as a tightness around the circumference of the head or as a constant, dull ache. The pain may also spread to or from the neck. Tension headaches can last for a few hours at a time, then fade, or in severe cases, several days. Usually, these fade on their own, but sometimes, in the case of chronic tension headaches, can ebb and flow continuously over the course of a month.

 

Medication Overuse Headache

Opiate-based medications such as codeine and morphine can relieve pain, but over time, the body adjusts to them, a process called tolerance. Tolerance can lead to painful headaches, along with other symptoms of opiate tolerance. It is generally best to use NSAIDs and other methods to treat repeating problems like headaches.

 

Cluster Headaches

Cluster headaches are frequent headaches that can be of varying duration. Their primary feature is that they happen more or less daily, at approximately the same time. This can range from multiple cluster headaches a day, to only near-daily, with a skipped day here or there. The exact symptoms of cluster headaches vary and, aside from pain (often around one eye,) they can include:

• A blocked or runny nose
• A drooping eyelid
• Tearing and redness in an eye
• Cold sweats, usually around the face

No matter what symptoms they present, cluster headaches usually come in swarms for about 4-12 weeks and then all of the symptoms disappear completely for a time. This total break from the cluster headaches is called remission, and the length of time depends on the person suffering from headaches but they can be months or even years.

 

Thunderclap Headaches

Thunderclap headaches are sudden, painful headaches that seem to come out of nowhere, like thunder. They are incredibly painful, and can last longer than 5 minutes. Thunderclap headaches are secondary headaches, which are often a sign of life-threatening conditions, including aneurysms, strokes, and infections such as meningitis. People with lupus are vulnerable to all three of these conditions, and a thunderclap headache is generally a signal to get medical assistance immediately.

Migraines and Lupus

Migraines involve the physical structure of the brain, as well as the person’s brain chemistry. In addition, they are different from other headaches in that they generally follow a certain structure:

Prodrome, or pre headache. This can last hours, or days. This usually happens in response to a trigger in the environment.

Aura, blurred vision or hallucinations that herald the headache, usually an hour before.

Headache, the pain itself, which generally occurs on one side of the head as a throbbing, pulsing pain. It can change sides, vary in severity and can also come along with nausea, balance issues, disorientation, mood changes, and brain fog. These other symptoms can occur during the prior stages, and linger afterwards.

And finally, Postdrome, or the “migraine hangover,” a state of fatigue and recovery that can drain the person for days.

Occasionally, the migraine will skip steps – they can occur without the aura or without the headache. They may be more prevalent in people with SLE, but evidence has been shaky.

Treating Headaches

Because they share similar causes, headaches, nausea, brain fog, and fatigue are often linked together, and people with lupus frequently have more than one ailment at a time. This also means that many headaches can be alleviated or prevented through proper hydration, a good night’s sleep, and stress-relief techniques. Headaches also generally go away with time, though pain-managing medications can help reduce the intensity of the pain enough to live with. SLE medication and stress reduction strategies can help reduce the likelihood of headaches in people with lupus, as well. Some people use alternative medicine such as acupuncture and mindfulness meditation for headache pain relief, with some results.

Certain headaches may call for prompt medical care instead of painkillers, however. According to Harvard Health, you should worry when:

• You only begin developing headaches after age 50.
• Your headaches change in frequency, regularity, or triggers.
• You start having more intense headaches.
• If coughing or moving increases your pain.
• The headaches become chronic (long-term) and worsen over time.
• You experience personality changes along with the headaches.
• Or your headaches follow a head injury or trauma.

People with lupus who are on immunosuppressant drugs should be extra vigilant, as they are more vulnerable to infections that can have headaches as a symptom.

Ergonomic handles can be found built into many different types of tools, but there are attachable handles that can be put onto any tool. For example, you can use an ergonomic handle on a broom to sweep easier and with less pain. Ergonomic handles are especially designed to fit in the hand comfortably, without putting stress on the joints in the hand and arm. While it increases comfort, ergonomic handles also improve the strength you can bring to bear on a particular mess, making you more effective, too! Crochet hooks, grippers, knives, water bottles, gardening tools, scissors, and even pens and pencils can all benefit from ergonomic handles.

The search terms to look for is “ergonomic handle” or “labor-saving handle”.

Cordless vacuums were once considered weak, but are now powerful enough to handle heavy dirt in a normal home. Barbara and Jim Twardowski’s blog post on Ability.com discusses the usefulness of vacuums with lightweight handles and the famous roomba cleaning robot.  Vibration is also a factor, but there are powerful, anti-allergy cordless vacuums with low vibrations out there. 

The search terms to look for are “cordless vacuum,” “lightweight cordless vacuum,” “cordless vacuum allergen”

Roombas and other robotic vacuums are also very handy because they clean automatically. Though they can’t handle certain types of messes and are stuck on the floor, they can keep the levels of dust and dirt down and make things a lot easier when you do have the spoons to clean.

Grabber Tools and Grippers are the classic “claw” tool that is useful for grabbing objects out of reach or picking up items without bending over. These tools come in a variety of handle types, claw types, and grip strengths, so find one that is right for you. Many people recommend that you have a gripper tool in every room for easy access, so you might end up with different types of grippers for different rooms in your home or for different tasks. 

The search terms to look for are “Grabber reacher tool”.

 

Microfiber dusters allow you to dust without throwing the dust into the air, protecting your airways from dust that gets tossed up into the air. They can be cleaned with soap and water. Microfibers come in duster form, but also in cloth form and as brooms or mops.

Examples: Set of four microfiber dusters on Amazon

The search terms to look for are “microfiber duster,” “microfiber hand duster”.

Air purifiers, filters, and touchless vacuums are a great way to remove potentially triggering dust and particles from the air. Some products, activate when you sweep and will suck up any dirt that you put in front of them, others just turn on and run, cleaning the air. 

Examples: 

Touchless Stationary Vacuum

The search terms to look for are “Stationary vacuum”.

Masks can help with dust and mold and, also, protect your airways from cleaning chemicals in the air. These days, it’s easy to find masks in a variety of types and fun designs.

 

Mopping Slippers are a unique way to clean the floor without bending down, using your arms or back, a broom, or a vacuum. Instead, you use your feet, by simply walking around. If normal or long-handled mops are painful to use or draining, this can be a great (and comfortable!) option. All you need to do is walk in the area you need to dust and then wash the slippers themselves. They come in a variety of shapes, sizes, and colors, so they suit many people’s needs.

Example: Frjjthchy Warm Microfiber Slippers

The search terms to look for: Mopping Slipper

 

Wheeled laundry baskets and cleaning carts can be a big help when you need to move laundry or cleaning supplies or, really, anything else through the house. They can be organized as needed and easy to use on different types of flooring, depending on the brand, and can help you avoid bending and lifting. There are a wide variety of these types of carts, and 

Examples:

Laundry Baskets with Wheels

The search term to look for are “Wheeled carts.” 

Wheeled or mobile chairs such as office chairs can also be a big help, since you can bring it with you and rest on it as needed.

 

Ergonomic sponges can make a difference in effort spent. Several people with mobility issues have spoken highly of the scrub daddy brand, which has a face-shaped grip that provides ergonomic support. Their main product, scrub daddy, uses a special foam that changes texture in warm or cold water. A sister product, scrub mommy, is double sided for smoother wiping.

The search terms to look for are “Ergonomic sponges”.

Cleaning gloves can save sensitive skin and protect you from temperature, textures, and harsh chemicals. Cleaning gloves come in many different materials and sizes, but rubber gloves are generally very good at protecting the skin. You can buy different color gloves for kitchen and bathroom use, but even if you only use gloves in one place or another, buy multiples so that you always have a spare set.

“The search terms we recommend are “reusable cleaning gloves, rubber gloves”.

Sterilize Surfaces with Steam and Natural Materials

Sterilizing surfaces is important for people with lupus, since the immune system is less effective, and many lupus drugs suppress the immune system to prevent symptoms. If you are trying to avoid harsh chemicals, heat and steam are good options, as is lemon juice and white vinegar. The smell can be off-putting, so be sure to wipe off these substances after using. They also don’t completely disinfect on surfaces. Hydrogen peroxide is a natural and safe way to kill bacteria and mold – it even turns into oxygen in the end. It also removes stains, but it can also bleach. 

Essential oils do have some antibacterial properties, including tea tree, citronella, geranium, lemongrass, orange, and pachouli. They work best when mixed with other cleaning solutions, such as rubbing alcohol or soup with water. Be careful – we don’t know all of the properties of essential oils or all of their interactions with each other or with medications. If you are sensitive to scents, these may not be a good solution and they aren’t as effective at sterilizing surfaces as chemical cleaners or hydrogen peroxide. However, they are an option, and best purchased at local stores.

A steam mop is a mop that, as the name implies, steams the floor that it cleans. This removes stains and also disinfects with the steam’s heat, while not leaving much water to clean or slosh around. It comes in corded and cordless forms, and some brands have different mop heads that work for different floor types such as wood or tile.

Take Frequent Breaks 

Cleaning is hard work, physically and mentally and though satisfying, can be fatiguing even for people who aren’t dealing with lupus. Take a moment to sit and rest in between chores to rest and recharge.  These breaks are also great opportunities to practice meditation, including mindfulness. 

Taking breaks works especially well if the cleaning tasks are broken down into smaller tasks – the smaller tasks are less likely to be a drain on energy and provide easy break points between tasks.

Use Disposable Items

But what if you didn’t need to clean at all? Preventing the mess before it happens is very useful, but how do you do it?

Paper plates may mean more trash and paper waste, but also mean fewer dishes that need to be washed, so this may be a win in your book.

Try disposable aluminum pans and silverware as well – biodegradable versions are available, but keep in mind that these will sometimes degrade in hot foods such as soup, so be careful about what kind you buy. 

Disinfectant wipes can be used for more than just wiping hands. They are also good for wiping table surfaces, sinks, chairs, the fridge, phone screens, and the floor. Then they can be thrown away. There are biodegradable wipes such as Bioclean (which can biodegrade in a landfill,) and Clorox (which can biodegrade in a composter,) among other brands if you are worried about the trash you would be producing. 

Plain white vinegar and baking soda are a surprisingly effective cleaning agent. mix them together in a plastic tub with some water, let anything dirty soak for 30 minutes, and wipe. They are relatively inexpensive and are not as harsh as other cleaning chemicals.

Put Supplies in a Good Location

Keep these cleaning supplies near the places you need to clean the most in a reachable spot. That way, you can clean the high priority areas easily and only need to move further afield when you have the spoons for it. Obviously, having cleaning supplies in every room would be ideal, but having maybe a set of disinfectant wipes in each room, a broom, or a pair of mopping slippers might help. 

Break Down Large Must-Do Tasks

Cleaning your living space and other large tasks can seem like a monumental task. Even more focused tasks such as “clean the floors,” “wipe down surfaces,” “clean the kitchen,” or “take out the trash” can look as difficult as a hike up Mt. Everest. When the chore feels too big, people are unlikely to get started. Even people who don’t have to deal with chronic diseases procrastinate on these tasks. Since people with lupus have to manage pain and limited energy, they have every right to be intimidated by these daunting tasks.

The trick, though, is to break these down into a bunch of smaller tasks. Instead of “clean the floors,” maybe instead have “vacuum the bedroom, vacuum the living room, wash the kitchen floor, etc.” Instead of “wipe down surfaces,” break it down to, for example, wiping the surfaces room by room. You will end up with a larger list of tasks, which is intimidating in its own way, but these tasks are smaller and so you will be able to check them off your list one by one and they’ll be done – the morale boost from that will be more than worth it. Smaller tasks are also useful for pacing and managing your fatigue.

Scheduling and reminder apps can make basic chores less of a pain by making them a habit or routine instead. Routines take less energy because you aren’t thinking about it as much. It can also help to portion out time into manageable chunks that will be less fatiguing than spending hours on the same overall task and spread out the chores over time.

Prioritize Tasks and Do the Necessities First

What do lupuswarriors need most regarding cleaning? If there are multiple things that need to be cleaned, it’s more important to deal with the essentials. Lupuswarriors should make sure to do any tasks important to maintain good hygiene and protect their health. Anything related to self-care, safety or flare-trigger prevention should be definitely put ahead of the rest. For example, cleaning food-related messes (removing areas where bacteria can grow,) sterilizing surfaces, cleaning your body, moving aside objects that are blocking paths and could cause tripping hazards or falling, and taking care of pets.   

If those tasks are all that you end up being able to do that day, then you should take that as a victory!

Go Easy on Yourself

There is a lot of societal pressure on people with lupus, and everyday life is not and has never been easy. Lupus is a hard fight and sometimes just getting through the day is more than enough, even if the dishes don’t get done that day and the floor still needs cleaning. You are unlikely to achieve perfection and get your space so clean you can eat off the floor – sometimes you just have to settle with good enough.  And that’s okay! What hasn’t been done today can be done for tomorrow. Sometimes, taking away the pressure to do everything at once can actually help get more things done! It’s amazing what having reasonable expectations of yourself can do.

A Lupus Warrior’s Takeaway

People with lupus thrive in clean spaces. A clean space can help boost your mood and also is a way to get moving (cleaning is definitely light exercise), which has many benefits for people with lupus including combatting depression. A clean space can also help combat certain flare triggers like dust or allergens. Cleaning with lupus can be overwhelming, but it is worth it.  Hopefully these tips, tricks, and tools help. 

People say the darndest things, and even the most well-intentioned people can say things that can deeply wound people with lupus and other chronic diseases. 1.5 million Americans have lupus according to the Lupus Foundation of America. That means that 1 in 200 people in the US are battling lupus. It’s not that rare, and neither are people saying frustrating things.

It’s understandable why people say these things. It is difficult to have empathy when you do not truly understand how someone with a chronic illness feels, especially one with invisible symptoms like pain, anxiety, fatigue, and depression. Lupus warriors know that this is a part of their battle, and often feel that they need to smile and swallow the harsh feelings that careless words cause, but it hurts all the same.

“You Don’t Look Sick.”

Also known as “You look fine!”,  “You can’t be that sick. You’re working!”, and many other similar phrases. Even when meant as a “complement,” this is the king of insensitive phrases. It dismisses a person’s experience – especially how they might be struggling to do basic activities – accuses them of lying about their symptoms, and makes people feel insecure about themselves.

Nearly 50% of people with lupus experience some sort of brain or nervous system-related symptom related to their lupus. It’s a challenge that makes everything a little more difficult, and depression and loneliness are also something that many people with lupus struggle with. When people say things like “You don’t look sick,” it really doesn’t help.

This is definitely a “Never Say” and it is worthy of an apology!

“You Don’t Need Those Meds!”

Also known as “Why are you putting those chemicals in you?” “Pull yourself up by your bootstraps,” and “Suck it up.”

Meds are an important part of treatment for people with lupus, reducing symptoms to a point where many can live a normal life.

In the user ShanThom72’s story, her lupus journey started with the first symptoms of lupus at age 8, and chronic kidney issues at 15 that resulted in a lupus diagnosis. However, once they were diagnosed, they began taking the appropriate meds and made it through college, began a career, married, and had a healthy baby boy. Once the treatment is right, then many things are possible.

While it is true that some people with lupus find relief with alternative therapies like acupuncture or reflexology, these treatments are not right for everyone. For many people with lupus, it took medication to get to the place they needed to be in order for these therapies to work for them at all. 

Fighting lupus is about absorbing advice and information, but also listening to one’s own body and finding what’s right. Medicines are a part of that journey, and can sometimes be hard on a person, but when people dismiss them as “chemicals” or “big pharma,” they dismiss part of a lupus warriors fight and devalue one of their key weapons against lupus.

“Have you tried X?”

“You should get more exercise” “You should try this diet I heard about!”

People sure like to give out unsolicited advice! Although there are some universal traits of a healthy diet, one’s diet is a very personal thing. They are figuring out what makes them feel good, either on their own or in communication with a doctor. They don’t need someone else butting in with advice they don’t need or may already be following.

People with lupus are sick of people telling them constantly to “eat healthier,” “get more exercise,” or “feel better.” They may be trying to help, but sometimes, it’s all that a lupus warrior can do to get through the day. If someone wants to try a recommendation, that’s up to them. They might have already tried that, too! For example, a  gluten free diets might not be right for them, or they found a restrictive autoimmune protocol diet difficult to keep to consistently. Getting nagged about it won’t make it work.

If they ask for advice, though, that’s a different story. And offering one’s own experiences, instead of recommendations, might be more helpful.

“You Don’t Go Out Anymore.”

This is right next to “Why aren’t you working,” and “Why aren’t you doing an activity you used to love,” and it’s just a step away from “You’re so boring these days!”

Having lupus means you can’t go out and do many activities with your friends. It’s not fun, but it’s also not their fault. We live in a society that wants people to “suck it up and move on.” It’s not right. Yes, as a person with lupus, there are responsibilities that your friend needs to keep up with, but lupus effects almost every organ system, and puts a huge strain on their life.

People with lupus have only so much energy to spare, often explained as “the Spoon theory.” What many healthy people don’t understand is that the little things take effort. Standing up, reaching out, picking out clothes, getting dressed – all of these take more energy and willpower for people with lupus. Simple tasks can be draining and can even draw against the energy available for the next day. A friend with lupus deserves support and appreciation, not selfishness and guilt.

The way to be a good friend to a person with lupus is to be flexible and understanding, and other, less-taxing ways to spend time with them.

“It Could be Worse!”

The only phrase more annoying is “I know how you feel.”

Both are dismissive and undermine their experience of their symptoms. Everyone dismisses their symptoms, even doctors, they don’t need someone else they care about doing it too.

These are forgivable, though, since they are an attempt to console and commiserate, and a natural reaction to being told about someone’s symptoms.

What to Say to a Person with Lupus

So what do you say to someone with lupus that isn’t accidentally insulting and rude? Well, what people with lupus need is positivity and support. Don’t minimize their symptoms, and just be a friend to them. Here are a few suggestions.

I’m Sorry to Hear That.

Or “I’m sorry you’re going through this.”

It’s difficult for someone who has never experienced the symptoms of lupus and other chronic illnesses to find the right thing to say, but sometimes it’s as simple as saying that you’re sorry that this what they are experiencing. It’s a good thing to say when you have nothing else, and it also shows that you care about their feelings and their fight.

Can I help?

Or “Is there something I can do?”

You can’t cure the disease, but you can help in other ways. You can pick up groceries or medications, do a little housework, help someone up the stairs. You can be mindful of the temperature, flare triggers, and tone of voice.  Running an errand for a friend with lupus is one less errand that they need to spend spoons on. Sometimes, though, if you know them well enough, picking up a treat or a small present on your way can mean the world.

There is a lot that you can do, but always ask first. It both offers aid and also asks if they want help. Some people with lupus would rather do things themselves. However, the offer to share the burden is still appreciated, as is the fact that you didn’t make the decision for them.

“Let’s Try This Activity Instead!”

Or “Let’s do something together. What can we do?” “I’m free this weekend, just let me know what you’re up for.”

Fatigue is frustrating for everyone involved. However, it isn’t the fault of the person with lupus. If you want to spend time with a friend or family member with lupus, find an alternative that doesn’t take as many “spoons!” There are many lower-energy activities out there and trying something new is always a wonderful bonding experience. A little flexibility in your schedule and what you want to do goes a long way to showing that you truly care about them as a person. That is a feeling more valuable than gold!

You can talk to me any time.

People with lupus have a lot of pain, frustration, and stress in their lives, and they, like everyone else, need someone to vent to. Sometimes, the best thing that you can do is be a listening ear and a shoulder to lean on.

You’re Doing a Great Job!

Lupus is a hard disease to deal with, and it can cause many struggles. Just hearing that “You’re doing great” is exactly what someone needs. It doesn’t seem like much, but sometimes a little appreciation can make someone’s day a little brighter.

Societal expectations are the rules that we make in order to safely navigate the complex social world of our lives and our cultures. Each culture has different social rules and expectations, and these can change over time. In general, however, for many people with lupus – and other painful invisible, difficult to diagnose or understand diseases – these expectations can weigh them down in ways that are unfair.

Lupus is also affected by the social determinants of health: economic stability, education, health access, neighborhood, and the social structure surrounding a person. However, the social determinants of health also affect expectations placed on a person. Especially those related to work and the acceptability of “getting help.”

Here are a few expectations that you might recognize:

• Supporting others monetarily, physically, and emotionally is a common social expectation. It can be difficult to support others while dealing with some of the symptoms of lupus. And doesn’t give people with lupus might find they aren’t left much room to take care of themselves.
• At work and at school, people are expected to be on time, notify people if they are too sick to work, dress neatly and appropriately, and keep a positive attitude. However, lupus flares can be unpredictable, fatigue and depression can make calling in very difficult, and the stress of being chronically ill and in pain (as well as getting poor-quality sleep) can put a dampener on attitude. Some workplaces also have issues with accommodating people with lupus. Read more about working and lupus here.
• Pain medication can be essential for people with lupus to get through life, but it is also stigmatized by society.  People with lupus experience pain in their joints and in other areas in the body, and people should not be forced to suffer through painful days when there are alternatives.
• Having the energy to spend time with friends and family. Lupus can drain that energy away and make it physically – and emotionally – difficult to devote resources to other people.
• Highly restrictive diets (including gluten free or AIP diets) can cause friction for some people with lupus, since they cannot or will not eat certain offered foods. However, fortunately, dietary restrictions are generally accepted by society, and many feel that not respecting someone’s dietary restrictions is rude (so, for once, social expectations working for the benefit of people with lupus!)

Women in particular are both more likely to develop lupus and to have enormous societal expectations placed upon them.

It can be hard to manage these expectations, and others, but it is possible to live a “normal” life with lupus. Here are a few tips and tricks to help you navigate through social expectations and make the most of things.

Tip 1: Forgive Yourself

Cut yourself some slack. There is a societal expectation to “suck it up“  and muddle through the challenges of illness in silence, and that can make many people with lupus feel like they are weak, have no agency, or are “doing it wrong.” But look at it this way: You are going through several ordeals at once. You are not ‘bad’ for having trouble meeting an expectation.

Lupus affects almost every organ system, including the brain and nervous system, which can greatly affect everyday life. Disability payments and other financial supports are a valid way to take care of yourself and your family. You can read about affording medications here. You are doing the best that you can with the hand you have been dealt, and society should be adjusting its expectations to fit you.

You deserve support and appreciation… and that includes from yourself.

The “Spoon Theory” is a useful method to explain this idea to others, and you can read more about it here.

Tip 2: Get a Therapist or Social Worker.

Therapists and social workers have a stigma attached to them. However, “getting help” is becoming more normalized by the year and is a very good idea for people with lupus. A professional, trained, outside party can help give you a neutral perspective on life. It can get you out of your own head a little. They can also give you advice and assistance in managing these expectations, both those placed on you by others, and those placed on you by yourself. They can also help you manage depression, anxiety, and other mental health consequences of lupus and its symptoms.

Also, PTSD can make it difficult to manage societal expectations, and is also misunderstood. People with lupus often have PTSD from one or multiple causes. PTSD episodes and lupus flares can be interrelated, cause issues with everyday life, and then make it more likely for an episode or a flare to occur. Managing societal expectations can help.

Tip 3: Prioritize Self-Care

Taking time for self-management is important. It may feel like “cheating” or “selfish” to let an expectation or responsibility fall short, but in the end, if you do not eat properly, sleep enough, drink enough water, take your medications, or get enough physical activity, you will get sicker and be less able to meet those expectations. If you take care of yourself, you’ll be better able to meet those expectations: For example, getting adequate physical activity can somewhat lift depression for people with lupus.

It’s all right to let low priority expectations fall by the wayside a little as you focus on the responsibilities or expectations that matter (such as your children, pets, and work,) and build up your strength. Supportive friends, family members, or co-workers can help you temporarily while you heal, and you might also be better able to manage those expectations once you’ve restored yourself a little more. Medical equipment can also help, by giving you the tools that you need to take care of yourself.

Tip 4: Stay Positive and Mindful

Stay positive, stay motivated, stay focused. Positivity is a known stress-management tool, and positive affirmations can help make positivity easier. You force yourself to bring your positive traits to the foreground of your mind, and to see the positive parts of your day. This can help control some of the negative feelings of anger and frustration associated with living with lupus.

Mindfulness-based techniques are known to both take care of the mental challenges of lupus and the physical challenges of lupus. However, mindfulness and other meditation techniques (including low-impact yoga) can also help with the emotional impacts of lupus and help manage your expectations of yourself. In some cases, they can even help you meet those expectations by helping get thoughts in order.

Tip 5: Use Social Media Carefully

Social media can be a powerful tool for socializing, support groups, and even for tracking health. You can read more about that here. However, social media can also be a toxic pit of expectations. A way for people to put unfair pressure on you to behave a certain way, do certain things, or believe certain things. Use it with caution and in moderation and try to find alternative support groups for your needs.

Tip 6: Avoid Alcohol

Alcohol can interact with lupus medications and can potentially make lupus worse by allowing autoimmune cells into more areas of the body. It also contributes to gout, brain fog, fatigue, and immune system regulation. There is a cultural expectation to drink in many places, and some people feel that it “dulls the edge” of their problems. But it generally leaves you worse off than when you started. Any health benefits – such as a slightly reduced risk of heart attack and stroke – are minor in comparison to its downsides. Drink in moderation, if at all, and stand strong if someone tries to coerce you into drinking socially.