Make Friends with Fatigue

Americans speak of illness in the terms of war. Dealing with cancer is almost always referred to as a fight or a battle. When a patient dies the obituary often states that death occurred only after a heroic struggle. I would submit that with chronic, painful conditions this endless fighting is a losing and costly strategy, particularly when it comes to dealing with the overwhelming fatigue that is so common among the chronically ill.

When I first became ill, I continued to cling stubbornly to the activities I’d always enjoyed—work, exercise, an active social life, the theater. The consequence of trying to maintain this busy life was that I kept getting sicker and sicker. Finally, when I started to listen to my body and rest when my body was telling me it needed to rest, things began to stabilize and then slowly improve. I learned my mind was sharpest early in the morning, but by mid-morning I needed to go back to bed for a while. Any errands or chores were best done midday. If I wanted to make dinner and enjoy an evening with my husband, I needed to rest in bed in the late afternoon for an hour or two. I learned that my energy tank often hovered near E, and I had no reserve tank. I spent a lot of time in bed for a lot of years.

I feel that making friends with fatigue was a way to honor and respect my illness and integrate my emotional and spiritual self with my physical self. It was an act of making positive peace with the reality of my new life. When I failed to pay attention to fatigue, my symptoms flared and my body let me know the rules hadn’t changed. Sometimes it was worth it to overdo a bit, and pay the price, but most of the time I complied. I learned to love the quiet and my rest period became a cherished time for contemplation and reflection, and ultimately transformation. Once I quit fighting my illness, fatigue became not only my friend, but also my teacher.

Be Honest About How You Feel

When someone asks, ‘how are you?’ the customary answer is just one word, ‘fine’. Those of us who live with chronic illness and pain are hardly ever fine. Maybe better than yesterday, or good enough to make it out of the house for a while, but fine? Not often.

If we are going to build a supportive community around us, we need to be honest about how we are feeling. It’s not in our interest to imply we are fine when we are not. We also don’t want to be a constant complainer, because no one wants to be around that person. Being honest about how you are feeling requires a bit of balance.

The trick, I’ve found, is to first be realistic about the person you are talking to and the context of the conversation. Then be as honest as you can, without whining. For example, some people don’t really want to know how you are; they’re just making small talk. It’s like the person who says ‘let’s do lunch sometime’ more to end the conversation than to actually make a date for lunch. So, I might say to this person no more than, “I’m just OK today.”

Someone who actually cares, but is on the periphery of your life might get a little more expanded answer, “It’s been a tough week, but I’m starting to feel better today.” Or conversely, “I’m just at the beginning of a flare, so I’m going to enjoy today as much as I can.” This conversation may or may not go any deeper.

For someone who is truly part of your everyday life, knows you well and knows you are ill, you need to tell the truth because the way you are feeling from day to day also affects them. “I need you to know I’m having a rough day today, so if I’m quiet or seem moody, it’s not you, I just don’t feel very well.” To the children it might be, “Mom’s going to need a helping hand from you today. I’m not feeling too strong, so thanks for being my big boy/girl.”

It is possible to be honest without coming across as a victim. It is possible to ask for help without seeming helpless. The people who really care about you would prefer to know the truth and will be supportive. If there is someone in your life who wants you to pretend to be doing great all the time, maybe they need a little push to get real, or a harder push to move outside the strong circle of support that you are building around you.

Patient Effectiveness: How To Be Sick.

Here’s the frustrating thing. Schoolteachers get training to be schoolteachers. Pregnant moms and their partners can take a class on childbirth. Trained therapists help people deal with mental and emotional problems. Physicians, nurses, lawyers—all get training, years of it, on how to do their job.

Nobody teaches you how to be sick, at least nobody is in charge of it, or certifies it, or let’s you know when you are ready to graduate and do it well. In my experience, it’s a rare and special physician who will diagnose a patient with a chronic illness and then take on the additional role of making sure that the patient has all the resources needed to successfully navigate the difficult journey ahead.

This educational gap is a big reason why being sick is such a hard job. And it’s no wonder sick people often feel so lost, confused and abandoned. Our providers are pretty good, and getting better, about teaching us how to take medications. Not so good at all the rest of the challenges we face, like managing pain, fatigue, grief, work and family challenges, diet, exercise and provider relationships. If I had to name a single reason for this, I’d say it’s because the American health care system is built on the assumption that patients aren’t supposed to stay sick. We believe in cures!

Now that we face epidemic levels of chronically ill citizens and are counting the dollars this costs us, there is movement in our country to become more pro-active at helping people learn how to be sick effectively, and I am a passionate part of it. There are career paths for patient advocates and patient navigators and a national committee has been formed to establish certification standards. There are helpful books, like my own, not on a specific illness, but on the experience of being ill. There are patient support sites and forums and disease specific groups offering resources. Health care and hospital organizations are beginning to offer patient self-management training.

Even with this promising forward movement, I don’t think there is a national sense of obligation to patients. I don’t see a widespread social agreement that sick people need and deserve support they cannot provide for themselves. Effective patient education is far from a standard of care. Change can’t come too soon.

Is Your Body Trying to Tell You Something?

A few years back I read a great book by Jim Lynch called The Highest Tide. It was about a young boy who was fascinated by the sea life in the bays around his Pacific Northwest home and spent early mornings in his boat roaming the shallow waters. Then he began to notice that the sea life was changing, new things appeared he had not seen before and did not seem to belong. His observations caught the attention of the local press and he was asked by a reporter, “What do you think Mother Nature is trying to tell us?”

He answered, “PAY ATTENTION!”

I was diagnosed with interstitial cystitis nearly two decades ago and my condition has been well managed for years, but recently I had a flare of symptoms, primarily pelvic pain that went on for weeks and weeks. I thought, what is my body trying to tell me? I reviewed recent activity and stress levels, and had to acknowledge I was way over the top in both areas. We sold our house, moved, downsized and I packed and lifted boxes for weeks and weeks. That hard work was now past, but I was still in a flare.

I reviewed the list of foods to avoid for IC patients and saw that many new ones had been added since I last checked. Had I made any dietary changes in recent months that might contribute to this persistent pain? Imagine my dismay when I realized the culprit could be that lovely little shot of Tequila with a squeeze of lime I’d been enjoying in the evenings recently. I cut it out, a few weeks later, flare resolved. Darn, I hate when that happens, when the good news is bad news.

The second bit of compensating good news is that my body was trying to tell me something, and when it got loud enough to get me to PAY ATTENTION, the answer emerged. A good lesson—re-learned. 

Did you know. . .

Did you know that author Joy Selak is a columnist for the National Pain Report?

Click here read her contributions!