Living and Thriving with RA: “I’m So Tired of Being Tired.”

When you have rheumatoid arthritis, learning to manage your energy is a critical coping skill.

By Lene Andersen

Adapted from Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain

You have just got­ten up from a full night’s sleep and feel exhausted. You drag yourself to work, and by lunch­time you’re achy and need a nap. By the time you get home, your joints are screaming and all you can do is keel over into bed.

Having rheumatoid arthritis (RA) often means having less energy. The disease itself causes a healthy dol­lop of fatigue, especially when it is not under control, and pain is very draining, too. Pain and fatigue are the evil twins of RA—being in pain takes a lot of energy—and when you have less energy, you feel the pain more. Learning how to man­age your energy and working within your limits can be effective tools to manage pain and prevent flares.

For many of us, managing the fatigue that comes with RA is one of the most challenging aspects of living with the disease. It is one thing to read about fatigue; it is quite another to live with the con­sequences. Your house is a mess, you haven’t cooked a proper meal in weeks, and, if you are in pain, it makes you want to cry. It is essen­tial to learn to pay attention not to the tasks of the day but to your body’s opinion of them.

We are so used to living under pressure that backing off and doing less can feel like giving up or be­ing lazy. Sometimes those around you also join in what can only be described as a judgment party. Not only is the voice in your head be­rating you for slowing down but sometimes the people in your life start questioning you, too.

How do you explain to both yourself and those around you the changes that living with a chronic illness have made? A woman named Christine Miserandino invented the spoon theory to do just that.

It works like this: You get up in the morning with a certain amount of energy, represented by a number of spoons (Miserandino used 12). Everything you do throughout the day takes away one or more spoons. The goal is to manage your “spoon expenditure” so that by the end of the day you have not used more than your daily allotment. Using more spoons than you have means you will need to borrow from tomor­row’s store, which in turn means you’ll start the next day with fewer spoons available.

Visualizing your energy as some­thing tangible that can be measured can be very helpful. It can make it easier to accept the changes in your energy levels, can help you spend the energy more wisely, and is a terrific tool for explaining your reality to others.

Which brings us to the idea of pacing yourself. Sure, you’ve wrapped your head around the fact that you have less energy and need to be careful using it, but what does this actually look like? Think of it this way: you need to have a PLAN.

That means have a plan B, learn to say no, set attainable goals, and nap.

Plan B

Most people have a mental or writ­ten list of things they plan to get done. I am a big fan of lists—they keep me on track, and I thoroughly enjoy scratching things out when I’m done.

The downfall for many people with RA is having only one plan. The list is there; things need to get done. If you are having a bad day, they still need to get done. This might have you plowing through the list regardless of how you feel. As many of us know, this can cause a flare that lasts for days. On the other hand, if you simply don’t have the energy, having only one option can send you into hiding on the couch, feeling like a failure.

Instead of approaching your list in an either/or manner, divide it into items that need more or less time and energy. This gives you flexibility to adjust your activity level. If you have a bad day, pick a less intense task. For instance, pay­ing your bills while seated at a desk takes less energy than vacuuming the living room; heat up leftovers or a prepared meal from your super­market’s freezer instead of cooking from scratch, and so on.

Having a plan B (and C, D, and possibly E) means you have the option of still doing something, whether your goal is to be produc­tive or to enjoy yourself. You have now created a situation that builds successes instead of failures. This will help you feel better about your­self, which makes it easier to live with RA.

Learn To Say No

Such a little word, so very hard to say. Instead, we instinctively say yes, only later realizing that we have just bought ourselves a ticket on the ex­haustion train.

This is my Achilles’ heel. I have an almost pathological inability to say no, especially when something sounds interesting. Soon afterward I’ve worked myself into a flare, and then nothing gets done at all.

It took years of overcommitting before I learned that I have to trick myself. When people ask if I can do something, I say I’ll have to check my schedule and get back to them. Giving myself time to think means connecting to what I truly want to do and to the reality of my physical health. Knowing I have a solid rea­son to say no makes it easier for the word to come out of my mouth.

My trick might work for you as well, or maybe something else would be more helpful. Spend some time thinking about what happens when you say yes and later think you shouldn’t have. Analyzing these types of situations and your own reactions and feelings connected to them will help you identify a strat­egy to protect your energy and re­duce your pain.

Set Attainable Goals

Everyone I know has a tendency to overestimate how much they can do. When you are healthy, over­doing it can lead to an exhausted weekend. When you have RA, it can trigger a domino effect that can lead to severe fatigue and even a flare.

To avoid this domino effect, it is better to underestimate how much you can do. When you set yourself a goal, make sure it is attainable, something you know you can eas­ily do. Attainable goals can help you build on success, making you feel better about yourself. In the long run, you will get more done.

As an example, let’s consider my dining-room table, aka the horizon­tal filing area. Because I use a wheel­chair and have some serious mobil­ity issues, I tend to use my table as a temporary storage area. Cleaning up bores me, and I only have so much energy, which I tend to use on other things. As you can imagine, my ta­ble is often a bit of a mess. When the files take over, I’ll set myself a goal of dealing with three pieces of paper every day. When those three pieces of paper are done, I’ll walk away. Us­ing this method means I won’t have to take long breaks while I nurse a flare caused by doing it all in one day. I can also do the other things in my life that require my attention, such as work, buying groceries, and so on. My three pieces of paper per day lead to a clean table faster than you’d think. Setting attainable goals taught me that slow and steady re­ally does win the race.

Another example is exercise. Get­ting in shape can help you stay flex­ible and keep your muscles strong, which supports your joints. Decid­ing you want to exercise every day is likely to set you up for failure. Life gets in the way, you are too tired, or you hurt too much. On the other hand, setting a goal of exercising twice a week is more easily attain­able (unless you are flat on your back with a flare, of course). This creates a success, which makes you feel good about yourself.

Setting attainable goals can be used for pretty much everything: gardening, cleaning the house, learning to meditate, organizing the garage, dealing with a pile of mail—you get the idea. Setting a goal that seems ridiculously easy might seem, well, ridiculous at first, but setting an easy goal ensures that you will be able to do a little every time you do the task in ques­tion. Building success upon success makes you feel much better about yourself, and in the long run it of­ten gets a lot more done.

Nap

As I mentioned earlier, RA often comes hand in hand with a signifi­cant amount of fatigue. This can mean that people with RA need more sleep than others do. When you have RA, a nap is not an indul­gence; it can be one of the most im­portant things you do.

Several years ago it became nec­essary for me to have a nap every afternoon to manage my pain and energy. Without that rest in the middle of the day, I’d run out of en­ergy (or spoons), and my pain levels would go through the roof. With the nap, I have the energy I need to get through my day and, most of the time, pain that is easier to manage. To shut people up who remarked on how lovely it must be to be able to nap and to emphasize the necessity of the rest, I changed the language I used. I stopped using the word nap and instead now call it my manda­tory rest period.

Admittedly, I am a writer who shares her apartment only with a silly cat. Both of these factors make it easier for me to adjust my sched­ule to incorporate a nap. When you work outside the home and have children, finding time to have a mandatory rest period can seem impossible. Thinking creatively may help. Does your employer have a sick room that you can use? Could your spouse mind the children for a half hour when you get home? Can you lie down on the couch while the kids do their homework?

Lying down, even for just a half hour, can do wonders for your abili­ty to do what you need to do. If your body tells you that you need to take a rest, listen to it. This helps you regain a spoon or two that you will need for the rest of the day.

Learning to pace yourself takes time. It means putting your own needs first—something we often in­stinctively label as “selfish.” It isn’t. As with so many other preconceived notions, it helps to turn it around and look at it another way. Think of what I call “The Yellow Oxygen Mask Rule.”

When you fly, the flight atten­dants take you through the safety procedures. Should the cabin pres­sure change, the yellow oxygen masks will fall from the ceiling. If you are flying with a child or some­one else who is dependent on you, you must apply the mask to yourself first. It sounds selfish, but there is a very good reason for it. If you are responsible for someone else, you must stay conscious. If you first put the mask on the person you are tak­ing care of, you may pass out and therefore be of no help.

Your energy is your oxygen. Tak­ing care of yourself actually enables you to be a better employee, son or daughter, spouse, parent, and friend. Meeting your need for more sleep and rest protects your store of spoons. Implementing the PLAN in your life will help you feel better, and the people who need you will benefit.