Living with lupus can be difficult and because lupus can affect so many body systems, different people may have different challenges. Two of the most common complaints from people who have lupus are fatigue and cognitive dysfunction, or “lupus fog.”
According to the Lupus Foundation of America, up to 80 percent of people with lupus complain about fatigue, with the level of fatigue ranging from annoying to crippling.
If you are fatigued, there are some steps that may help you manage:
While life can throw curveballs, plan ahead as much as possible. For example, if you can cook some big batches of food to freeze while you’re feeling good, you can thaw out a meal on a day you’re too tired to cook.
Yes, even if you’re fatigued, exercise may help you feel better. You don’t have to go for full-out dance or aerobics classes, but regular walks or swimming can get your body moving and tired in a way that you may sleep better. Exercise like yoga or tai chi can also help you relax and build or keep muscle mass, as well as aid your balance.
Set a regular sleep regimen.
Sleep hygiene, the practice of making your routine and environment as good as possible for a restful sleep is important. Try to set the same time for going to bed every night, regardless of work or weekend. Set up your bedroom to be as peaceful as possible and electronics free.
Sleep experts say that your bedroom should be just for sleep and sex. Having electronics and work available in your sleeping area causes distraction from the goal of getting rest. Other tips include making sure your room is dark enough, the temperature is right, your bedding (including your pillow) is as comfortable as possible, and that your environment is as quiet as it can be (or wear earplugs!).
Some people with lupus experience being forgetful, not remembering how to complete a familiar task, or not quite “getting it” when trying to learn something. Sometimes called “lupus fog,” this can be very annoying and distressing.
If you’re having problems with your memory or with performing tasks that you used to easily do, here are some tips that may help:
Keep a calendar.
Whether it’s on a smart phone, a computer, or a paper calendar, write everything down from appointments to tasks. Try to keep all your information in just one area, rather than on pieces of paper in different locations. If you do use electronics like a smart phone, you could link your calendar and task list to your partner’s or someone else, so they can help keep track.
Again, you can be “old school” and use alarm clocks or you can use smart phones and one of the many available apps that can help you remember to do things throughout the day. You can set alarms for taking medications, putting the trash out, even calling friends or going out to dinner.
Always keep paper and pen with you.
If you always have something to write with and write on, you can take notes of new names, events, anything that you may have to remember later on.
Take your time.
When we rush, we often fail to notice the little things that help us remember. If you’re learning something new or you are in a new environment, slow down, take your time. Pay attention to what is going on around you, even the little details.
Ask for help.
If you need someone to help you do something, ask.