Book Excerpt: My Own Medicine – The Process of Recovery from Chronic Illness By Diane Kerner
Section 2: Specific Adaptive Strategies
Real Rest Rest is the first order of business when you have chronic fatigue syndrome(CFS). Your body is ill and your energy is needed on the inside for the time being. If you get the rest thing down you will find that you can get by on less of it eventually. But in the beginning it is crucial to lay low and let your body do the hard work of mending itself. We know that people with CFS tend to have "non-restorative" sleep. That is, even with a good amount of sleep, we wake up feeling tired, as if we were just getting to bed after a full day — in fact sometimes feeling worse than when we went to bed the night before. It also means our bodies are not getting the recharging sleep is supposed to bring. I'm not sure the medical profession actually knows why this is, but it underscores the prominent role that rest must take in caring for and encouraging your body during this illness.
I have considered that CFS is the body-mind's way of forcing overworked or overwhelmed people to slow down. Recall that CFS occurs most commonly in overachiever types and often in people with a history of early truama who might have trouble feeling safe in the world. I know this rings a bit true in my own case. It is clear that, for me, a force such as this illness was the only way to get me to slow down! On the other hand I am also easily overwhelmed. Perhaps my overachieving and fast pace had been a way to drown out the noise of my fear. I have known many people with CFS who still insist they must do all of the housework, chauffeur friends and family around and pick up after their teen-aged children. Not so surprising to me that they have trouble getting better.
Rest doesn't come easy in our culture. One wants to avoid the label of "couch potato" or "lazy." At the same time, we praise people for taking a day off to lounge in the hammock. But it is conditional. There is an implied requirement that one must first work too hard to earn the rest period. It's not surprising to me that people with chronic illness have to struggle to allow themselves to rest. Many of us truly don't remember how. So let me spell it out some. On the work front, if you are like many of us, you go to work sick. It is expected in the workplace culture, and that has created fear of being looked upon unfavorably by superiors if we do stay home with a cold. All of us have experienced co-workers hacking away with some horrible respiratory illness at the copy machine or in the cubicle next door. I don't know how we got ourselves to this point but I find it rare to meet people who actually take the time their body needs to repair when they fall ill. A chronic illness will gradually force you to. It will shout louder and louder until you listen. So listen early and save yourself from feeling worse than you already do.
Whatever you can. Recovery can be a full-time job in itself! Work is a very tricky area because one's livelihood is at stake. In my experience, many of us underestimate what is possible for us financially. We are quick to say "But I have to work!" or to think that the CFS will go away in just another week or month. It can be very hard to expand the mind. You may qualify for disability benefits from your employer or for Social Security Disability benefits from the U.S. government. Do some math and figure what you really can get by on. What is the bottom line? Perhaps you can get by on much less money working for a lower wage at a job that is less stressful in which you can be happier. Either way, rest is vital. Consider a leave of absence, reduced hours or job sharing. If you don't like your job, seriously explore quitting. Remember that things are never static. Just because you downshift your career efforts for now doesn't mean the change or break is forever. You have to do your own work around this, but please take a good close look. It is such an important piece of the recovery process.
Try writing out all of your fixed monthly expenses like rent and utilities. See what you might be able to alter. Can you do with fewer television channels? Can student loans be deferred? What about making minimum payments on your credit card for the time being or doing without internet access? Could you get rid of that second phone line or cell phone? Another way we can get much-needed rest is by letting go of social, household and other commitments.
Practice making tentative plans. Pace yourself. As I developed a pace that adapted to my CFS, I found that it was important for me to rest between tasks. I don't generally schedule more than one away-from-home thing in any day, even if they are hours apart. I rarely say I will absolutely be somewhere or do something so I can gauge my energy level at the time of the event. Of course, I place a priority on important occasions, but some of these I may miss and it can be a challenge to allow that to happen. Overachievers overbook themselves. Make whole blank days on your calendar a goal. If it's a work day, see about staying in that night. If I plan any activity for the better part of one day, I leave the next day blank so that I can be quiet and rest. Remember that you will be able to loosen up on these changes once you are better. It's just for now, for you.
Another challenge to doing less is the pressure we, and sometimes others, put on ourselves to be productive. I mention this earlier in this book. Treat yourself to a whole lot of compassion, love and understanding. Resting is doing. I have said that had I allowed myself this relatively simple thing, I might have recovered years earlier than I did. Years! Think of it. Nap when you feel like it. I find it difficult to fall asleep in the daytime but if I really get to feeling sleepy I will lay down and rest. This is my form of napping. And it is a form of self love to hear the body ask for rest and to respond by stopping your activity. Why do we fight our own bodies so? It is so disrespectful. It creates a negative relationship between the mind and the body. What is that about? How does that make any sense? Is this what we want?
You've probably read a lot about meditation. This is another way to rest as long as you aren't a fretful meditator! Sitting quietly while watching the breath or repeating a mantra or pondering a tree benefits us by calming the mind along with the body. Studies have shown that it also reduces depression and blood pressure and can improve immune system function. Pay attention to your breathing. Shallow breathing from the chest can be a stress response. Inhaling and exhaling through alternate nostrils can be very soothing as it quiets the nervous system. There are various forms of nostril breathing. The one I like the best begins with long slow breaths in and out of the same nostril, repeating on the other side and ending with alternately breathing in one nostril – holding for a second – and breathing out the other using your fingers to close one side at a time.
Remember to say no when you need to. This is more of a problem for some of us than others. It is important for a very good reason. Have you ever observed a situation in which a person feels obligated to do something they really don't want to do? I have seen that the stronger the person feels that obligation and the more aversive the task, the more likely he or she is to come down with a sudden cold or flu just at the time of the dreaded event. It reminds me of the game of racing cars until someone chickens out — like in the James Dean movie, Rebel Without A Cause. As the event (or cliff) gets closer and your mind keeps telling you that you must go forward, the body pulls out at the last minute and says, "No way. I won't go." Don't force your body to pull that move. Say no when you mean no, and don’t say yes unless you really mean it. If you feel you need permission to say no, spend some time exploring that.
This life is precious. And it is short. Learn to set limits. This is a neighbor to no. I always have a real hard time telling family and friends that I can't tolerate lengthy visits or phone calls. This alone is a big reason that people with CFS hang out with each other more than with their healthy friends. They don't need to explain and are usually keenly aware and thoughtful of each other's limitations. How does a healthy person relate to the exhaustion created just by keeping yourself alert enough to participate in a conversation? I remember so many times when I would tell people I was too tired to do something and they'd say, "That's alright. We don't have to do anything. We'll just sit around." How do you explain that just having a visitor in the room, no matter how beloved, is tiring and certainly not restful. It is the break from routine that exhausts, having to be present for something or struggling with a deep-seated need to please the other and ignore one’s own needs.
If you have trouble sleeping, as many of us do, take some action. A lot of people take low doses of prescription medications, perhaps rotating different types to avoid becomming dependent. Some find the herb valerian or melatonin to be very helpful. A warm bath an hour before bedtime can help to make us sleepy. Moderate exercise earlier in the evening can help us fall into a good sleep. Just use caution and don't overdo. We are often quick to judge ourselves — not good enough, long enough, hard enough, fast enough — when exercising. Suspend the judgments and remember the goal is to love yourself enough to take care of yourself. Light exercise, including stretching, may help you sleep better. It's not marathon training. I do find that the less active I am during the day, the poorer the quality of my sleep. But with CFS, how active is too active and how inactive too inactive? You have to work with yourself and learn your own limits.
My Own Medicine: The Process of Recovery from Chronic Illness by Diane Kerner is published by iUniverse, Inc., and can be purchased from Amazon.com by clicking on the following link: http://www.amazon.com/exec/obidos/tg/detail/-/0595326099/qid=1098200337/sr=1-2/ref=sr_1_2/102-6838062-2517730?v=glance&s=books The preceding excerpt is (c) 2004 Diane Kerner, all rights reserved. Reprinted with permission of the author.