Coping with Chronic Fatigue Syndrome & Myalgic Encephalomyelitis

Coping-with-ME-CFS

Coping with a chronic illness presents an enormous challenge. A patient with diabetes, cancer, multiple sclerosis, allergies, high blood pressure, or any other condition that does not resolve by itself has to make adjustments. Some illnesses require constant accommodation, while others may require fewer changes. For example, for those with high blood pressure, medication and a change of diet may be the only adjustments the patient has to make. ME/CFS, unfortunately, does not fall into that category. Patients with Chronic Fatigue Syndrome & Myalgic Encephalomyelitis must make profound changes in the way they live.

The key to coping with ME/CFS consists of first acknowledging the illness, and then adjusting to its limitations. Acknowledging the illness must be the first step. If you cannot accept that you are ill, making the necessary practical adjustments will be impossible.

Acceptance of a long-term illness means that your new life is going to be quite different from your former life, which is a scary thought for most individuals. In this new reality all the rules are different. Fortunately, you can benefit from the wisdom and experience of many patients who have gone before you. These are some of the successful coping techniques patients with ME/CFS have developed.

Minimize Physical Stress

When you have Chronic Fatigue Syndrome & ME, your body is not the same safe haven it used to be. Any form of physical strain, whether it’s exercising, or simply walking into an air-conditioned room on a hot day, can set off a chain reaction that may leave you in bed for days. The first step toward relieving physical stress is to avoid it.

  • Avoid extremes of temperature – sudden changes in temperature provoke a surge in adrenal hormones. These not only depress the immune system, they place a strain on your endocrine system, which in ME/CFS patients is already compromised.
  • Avoid strain – it’s natural to want to help, but if someone needs assistance moving a heavy piece of furniture, say you have a bad back.
  • Maintain a regular meal schedule – your digestive system prepares for processing what you eat well in advance of your meals. By keeping to a routine, you will maximize your body’s ability to digest food. Good nutrition is essential for recovery.
  • Maintain a regular sleep schedule – maintaining a sleep schedule is problematic for those with insomnia, especially for people who have difficulty falling asleep. You may turn the lights off at 9 PM, but sleep may not come until hours later. It will help if you don’t do anything stimulating for several hours before bed.

It is not particularly important when or how you perform your routines. The idea is to develop a regular and predictable pattern that helps structure your day and minimizes your body’s need to adjust to change.

Minimize Psychological & Emotional Stress

Difficulty coping with stressful situations is one of the earliest symptoms of Chronic Fatigue Syndrome & ME. Many people with ME/CFS remark that a stressful job or home environment during the early stages of the illness contributed to the severity of the illness at onset, and some patients report that an inability to handle stress preceded their onset of ME/CFS by several months. Patients in the recovery phase often note that emotional stress can trigger flares; and those who are severely ill experience profound exacerbation of symptoms when placed in stressful situations or environments.

Stress exacerbates all illnesses. The reason stress has such far-reaching effects is that its mechanisms are complex, diffuse, and involve nearly every system in the body. Stress affects the vascular system, digestive system, endocrine system, central nervous system, and most metabolic processes. It also affects the immune system in ways that are sometimes subtle or contradictory, but which, nevertheless, have profound consequences.

A person who must endure the constant stress of a demanding job or active social life while ill with ME/CFS may find it difficult to recover. This does not prevent people from “carrying on,” or at least attempting to, even while ill. Letting go of obligations, responsibilities, and activities that have provided the framework for a productive life is a bitter pill to swallow. But those who are ill have no choice; ME/CFS rarely accommodates the patient’s former lifestyle

The many negative consequences of stressful situations make managing stress one of the most important coping techniques that a ME/CFS patient can make. Stress, unfortunately, is an unavoidable fact of life. Whether it’s losing a job or a loved one, moving to a new home, being injured, having a baby, or becoming ill, everyone experiences stress during the normal course of a lifetime. It is difficult to plan for such life events, let alone avert them. However, numerous other stressful situations are predictable and can be effectively controlled.

Two important stress-reduction strategies involve avoidance and reduction. Very ill patients probably should concentrate on avoiding as much stress as possible; those who are moderately to mildly ill, and who cannot escape stress because of continuing work or family obligations, should concentrate on methods to reduce the effects of stress.

Set priorities. You may have done everything that needed to be done in short order before you got sick. Now you will have to set priorities. Which things absolutely must be done? Those are the things you should think about. Your first priority, of course, is getting well. Everything else follows.

Just say no. When people call you on the telephone to participate in surveys, organize block parties, contribute to clothing drives, donate to worthy causes, subscribe to newspapers, or anything that contributes to your overall load, you need to let them know that you are not available. You can refuse politely. If it is something important, tell them you will participate when you feel better. If it is telemarketer calling, request that your name be removed from their calling list. (You may have to repeat yourself several times, but, by law, they must comply.) Although it may be difficult, it might also be wise to stop taking calls from annoying or demanding acquaintances. The same holds true for emails.

Establish limits. Make sure close friends and family members know when not to disturb you (nap or rest times). They should also be informed as to what you can and cannot do. Sometimes it is hard for people who used to depend on you to realize that you have limits now. Life will be easier for you, and for them, if you let them know that you cannot lift or carry, go out dancing, or anything else you formerly did, but cannot do now. Be clear; set some rules. You can set these rules without causing too much friction by inviting people to help you with your recovery. By not calling after 7 PM (to allow your body to prepare for sleep), not asking you to do strenuous work, and so on, your friends can help you get necessary rest.

You don’t have to finish what you start. You were probably involved in a number of projects when you became ill. Let them go. Tell yourself that the world will just have to wait for you (it will, believe it or not). You can decide whether these projects merit finishing when you have recovered. Meanwhile, have somebody pack up your work and store it away.

Procrastinate. Most tasks can be delayed for when you are better equipped to handle them. If you can’t delay, then only do the most important task.

Ask for help. For self-reliant individuals, asking for help feels like an admission of weakness. However, this is no time for false bravado. Ask your friends and family to help you. Pass on as many chores to them as you can. Friends can make appointments for you and then drive you where you need to go, pay your bills (you just need to sign the checks, or better still, have them set up online payment), clean your house, make your bed, take care of your children, cook, fend off telemarketers, and perform the numerous daily chores that can be a constant drain on you. If friends are not available, many churches have volunteers whose mission is to help shut-ins.

Screen phone calls. Answering machines were invented to record messages when you are out. For people with ME/CFS, they are most useful for recording messages when you are in. They are a wonderful aid for people who need a break from the demands of conversation during “down time” or who need to go to bed early or sleep late but do not want to miss an important call. It also helps to turn down the volume of your ringer.

Be selective about television programs. Television can be either a detriment to your health or a godsend, depending on how you use it. Stressful news programs, specials on serial killers, tense thrillers, frenetic commercials, and the general rapid pace and constant flickering can produce tension in anyone who is ill. In general, it may be of greater benefit to watch DVDs; light comedies, mysteries, nature programs, old movies, anything that will help distract your mind without taxing it.

Reducing Stress After-Effects

Many stressful situations cannot be avoided, such as the death of a family member, loss of a job or spouse, and accidents. But even comparatively minor stresses such as an unavoidable family visit or a medical appointment are guaranteed to produce symptoms in patients with Chronic Fatigue Syndrome & ME. If avoiding the situation is simply not possible, learning how to deal with the cascade effects that a stress reaction produces will help to stabilize your system before long-term consequences set in.

If you are mildly ill, walk. One of the best ways to rid the body of excess adrenaline is to walk. If you are severely ill and cannot walk, deep breathing will help calm the sympathetic nervous system.

Practice stress reduction exercises. Stress reduction exercises are invaluable to reduce the amount of stress you feel, calm adrenal responses, gain perspective, and give yourself a break from pressures and demands. Meditation, hypnosis, biofeedback, deep breathing, relaxation tapes, and yoga are all excellent methods for reducing stress. Remember, the mind-body connection goes two ways. When the body begins to churn out anxiety-producing hormones, the mind can limit the extent of its arousal. Many patients with ME/CFS have observed that even during severe illness and relapses, stress reduction techniques are helpful for maintaining a sense of calm.

Take a break. The first thing to remember when confronting any stressful situation is that the natural tendency is to rise to the occasion. Try not to give in entirely to the impulse and plan rest time. Lie down whenever you have a chance, and try to take your mind off situations that can easily become all-encompassing. Reducing stimulation also helps: turn off the television or radio, tell your children to play outside, switch off the lights, and unplug the phone.

Find distractions. Mental distraction is important and should be pursued when outside demands become overwhelming. Mystery or romance novels, soap operas, knitting, watching fish swim in a tank… in short, anything that puts the focus on something that requires no effort helps maintain tranquility.

Express yourself. Another good way to deal with stressful situations is to share your thoughts and feelings with someone who understands. A sympathetic ear can help alleviate some of the endless mental rehashing that accompanies decision-making under stress. If another person is not available, writing letters, keeping a journal, and drawing can be good forms of self-expression. Support groups can also provide a healthy outlet for stress-related emotions. Best of all is to find someone with ME/CFS who has shared your experience. If you are housebound and no one is close by, the internet can provide access to the world. Online ME/CFS forums and support groups can truly be lifesavers.


 

Further Reading

Bruce Campbell discusses some good methods for handling stress

Chrousos, George P, and Gold, Philip W. “The Concepts of Stress and Stress System Disorders.” Journal of the American Medical Association 267:1244-1252, 1992.

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Live Without Anxiety or Stress!
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