ME/CFS Self-Care : The Basics

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Last Updated: 10 December 2015 10 December 2015

by Howard Bloom

The Chronic Fatigue Syndrome/Chronic Fatigue and Immune Dysfunction Syndrome/Myalgic Encephalopathy (CFS/CFIDS/ME) is something each of us must fight in our own way, based on our own unique symptoms and circumstances. But there are some "self-­management" principles that apply to all of us, and that are especially important for newly diag­nosed patients to understand. This article is my attempt to share some of the guidelines I have developed over nine years of personally fighting this disease. By applying them, I have been able to achieve a great deal, despite being largely bedridden. With the following advice, I hope that you too can maximize what you are able to achieve within your own constraints.

First, before assuming CFS/CFIDS/ME is the cause of your symptoms, have you been rea­sonably tested to rule out other plausi­ble illnesses? This is a step recommended in all the literature (and required in the Centers for Disease Control and Prevention (CDC) diagnostic criteria), since many other diseases can mimic CFS/CFIDS/ME symp­toms.

A word of caution, however. Doctors' visits and tests can demand a great deal of time and energy—commodities that a person with CFIDS lacks. With­draw more than you have in your energy "bank account," and you will make yourself worse.

The "overdraft relapse" may not be evident for two days or for two weeks, but you can be sure it will occur—and it can range from somewhat in­creased pain to long-term incapacitation. Thus, the best, most well-intentioned doctor can some­times become your worst enemy—if you don't communicate your limits (how often you can make it to appointments, what times of day you typically feel best, etc.).

While there is currently no cure for CFIDS, skillful self-management (and appropriate medical treatment) can al­low you to function optimally within your new, more limited capabilities. Charles Darwin, who suffered from a dis­ease greatly resembling CFS/CFIDS/ME, re­searched, wrote, and aggressively pro­moted his theories of evolution while confined to his cottage, unable to attend the meetings of the Royal Society that would determine his brainchild's fate. Florence Nightingale also suffered from a CFIDS-like illness that forced her to do most of her major organizational work while confined to home, and severely lim­ited her social activity (e.g., she allowed only one visitor at a time).

The trick— and it is far, far harder than it sounds—is to "know thyself." Recognize that your illness has created new boundaries that you cannot push through—and a new set of rules gov­erning behaviors and activities that you previ­ously took for granted. Many of the truths you must learn about your "new" self will be hard to absorb and harder still to accept. Chronic illness of­ten brings with it a virtual reinvention of iden­tity. As with any loss, you may find that you go through a period of mourning for your lost abili­ties before you can fully face the reality of your current illness. With few exceptions, the basic rule is to learn your new limits and do not ex­ceed them, or you will pay dearly.

Think again in terms of having an energy bank account with very small balance. You must become aware of every penny of energy you ex­pend during the day. You have no passbook, so you must determine your balance through contin­uous self-assessment to ensure you do not over­draw your account.

As you go through your daily activities, imagine you are wearing a pedometer and keep a weather eye on it. The "mileage" of seemingly simple activities like walking up the stairs, moving from room to room, carrying and lifting—and just sitting up—can add up quickly to more than you can handle. Even talking and listening to others, however pleasur­able, are also extremely taxing to persons with CFIDS.

Therefore, to reduce your energy expenditure—to keep the mileage as low as possible on your "pedometer"—get others to fetch things for you (and do other chores for you) when possible. Sit when you do things that you might ordinarily do while standing up, such as brushing your teeth.

Take baths rather than showers so you can re­cline. And, when feasible, shift to the bed or a horizontal couch when doing activities you may have traditionally done sitting up.

One factor an actual, literal pedometer can't measure, but that a CFS/CFIDS/ME pedometer does, is stress. It is now the most draining experience you face: recognize it is your nemesis. Try to identify the circumstances and people that stress you, and minimize or avoid all you can.

And maximize the things that reduce stress for you—whether watching comedy films, listening to mu­sic, or engaging in a low-energy avocation or hobby (yoga and meditation help many patients).

If you can, keep a daily record or diary of the way you spend your energy (sitting, walking, talking on the phone, meeting with people, traveling out of the house, etc.). Also keep a record of the medica­tions and dietary supplements you take. Look for patterns in what variables corre­late with "good days" and which with bad.

It will not be easy, but over time you will get a sense of the size of the hidden treasury of energy you have, small though it might be, and what affects it.

To repeat: You have new limits of a kind you never imagined before. Get to know them well and do not exceed them.

Do not challenge your limits by trying to be your "old" self.

This temptation hits every CFS/CFIDS/ME victim, but it can carry you to new depths of illness, crushing you with even more severe limitations and surrealistic symptoms than you ever imagined possible. If you are going to get better—and many people do—it will be through skillful self-management, not through challenging your capabilities.

If you are a take-­charge, formerly high-achieving person, your new goal is an achievement of a dif­ferent kind—to rein yourself in; to gain a gentle self-discipline over your cravings for your former level of activity.

You are still capable of achieving miracles. But you will have to make them happen in new ways.

Finally, if you have insomnia, I highly recommend the following idiosyncratic "treatment": Obtain an auto-reverse cas­sette player, and buy or rent books-on-­tape that interest you. (Those available via rental are far superior to those on sale, since the rental versions are unabridged).

Place the cassette player next to your pil­low so you can operate the controls in the dark. (Use headphones if you live with others so as not to disturb them).

As you lie there sleeplessly, listening to the tape and the narrative will keep you from be­ing driven mad by boredom and frustra­tion. If you're lucky, it will lull you to sleep. At worst, just think how "well-­read" you'll be!

A member of the New York Academy of Sciences and the American Association for the Advancement of Science, CFS/CFIDS/ME veteran Howard Bloom is the author of The Lucifer Principle: A Scientific Expedition into the Forces of History.

The ME/CFS Initiation - A Primer for New Patients

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Last Updated: 30 November 2015 30 November 2015

By Rebecca Bradley

Chronic Fatigue Syndrome (CFS), or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), sounds like nothing until you get it. Whether you are self-diagnosed and are still looking for medical validation or already have your "official" diagnosis, the initiation rites into the ME/CFS club are pretty much the same.

There is an overwhelming fear of whom to believe and what to do. Questions roll around in your head, such as: What type of doctor do I need to see? Why do the symptoms change? Am I crazy? What do all the medical terms like EBV (Epstein-Barr virus), CFS (Chronic Fatigue Syndrome), FM (Fibromyalgia), NKCs (Natural Killer Cells), mitochondria and cognitive dysfunction mean?

In particular, when you speak with patients who have been around a few years, many of them seem more relaxed or knowledgeable about all the medical lingo and you may feel like a fish out of water. It is very typical for a new ME/CFS patient to feel overwhelmed and frightened, yet be determined to learn all they can to try and beat this illness. Patients tend to jump right into on-the-job training for their personal "medical degree," no college necessary.

As patients, we are educating the medical establishment, one­-on-one from the bottom up. That is why the old ­timers appear to know so much. It isn't that they are smarter than you; they have just been around longer. You'll catch up.

Fear is one of the worst enemies. As the symptoms move around or change, it is not unusual for a patient to question his or her own sanity. How can so many things be wrong? Why does my mind not work when I want it to? Why do I still feel like a Mack truck is parked on top of my body after I've already slept 14 hours? If I rest, will this go away? Will I ever get better? Where did my life as I knew it go? How dare it go on vacation and not take me with it!?!

Connecting

To overcome fear, a good starting place is to join a support group, even if you can't always make the meetings. They may have a telephone buddy for you, or at the least, someone you can talk with occasionally. Connect to other patients and don't let ignorance or isolation keep you down. Isolation is an enemy.

As For Treatments

There is a lot of misinformation out there. Some treatments help, some don't. That is a typical problem for both doctor and patient. Each person may respond differently to drugs and dosages.

Some patients prefer no treatment, while others seek aggressive intervention. Some want allopathic (standard medical treatment) while others turn to natural or homeopathic treatments. Many use a combination.

You have to learn to listen to your body and take your cues from it. Over time, it will tell you what you need; when to rest, what works, what doesn't. Let your intuition be your guide and develop your "ME/CFS radar." After all, no doctor knows your body as well as you do.

Accept that, as a patient—even if you were previously a medical professional—the assumption by many in the medical establishment is that a patient knows nothing. Change that stereotype. Don't blindly accept this type of attitude from a doctor.

Another idea is to get newsletters from several different patient organizations and groups. If you are able, read medical articles, speak with ME/CFS specialists, and if your area puts on a ME/CFS medical conference or has a speaker/lecturer, try to attend. Not only will you feel connected, you might learn something.

There is always plenty of floor space on which to lie down if your body gives out (most patients with ME/CFS seem to carry pillows and drinks at all times). If you can't personally attend a lecture, try to get the information.  Many support groups have information packets about this illness; many libraries lend out books and DVDs.

Training your doctor

Unfortunately, at this time, it is still rare that a patient can walk into any doctor's office and expect the doctor to know what to do. Treatment is still trial and error; but for those physicians in the know, there are many more tricks in the hat to try than a few years ago. Many inroads have been made in the medical community after years of advocacy and private research funding.

The government is starting to let some money flow into researchers' pockets. It often takes many years for a new disease to get through the pipeline from acknowledgment, research, and a welter of medical publications to the level of clinical acceptance. Look at the time it took before the cause' of most ulcers was pinpointed to be the H. Pylori bacterium. H. Pylori was discovered over 20 years ago, while ulcer patients were told their symptoms were caused by stress!

One big pitfall to look out for is the doctor who doesn't have a clue about ongoing ME/CFS research, and approaches ME/CFS like ulcers, i.e., "This is all in your mind; go see a psychiatrist." Many internists, and even specialists, feel comfortable making a psychiatric diagnosis with which they have little, if any, experience on the subject. How many psychiatrists would presume to diagnose a physical medical condition? (Kind of a one-way street, it seems).

Also, don't buy into the hype that you are just doctor-searching to hear what you want. We all know there are a few—very few—people out there like that.

But, if you are genuinely ill and get nowhere with the doctor you are seeing, go to the next. Whether you pay their bill directly or indirectly, doctors are our employees. Except, perhaps, in the case of HMOs— which may essentially own the doctors. It has now been proven by studies, and interviews with doctors who have left HMOs, that they were not allowed to give all options to their patients, or even worse, not able to order needed tests.

Since ME/CFS diagnosis is still based only on a research definition from the government, with no single sure-fire test, everything related to ME/CFS can be labeled experimental and unnecessary. Hence you may need to fight the system and demand the care you need.

Doctors who are clued in often can show definitive abnormalities on certain tests. There is something wrong in a ME/CFS body. It just doesn't say ME/CFS yet. Science only proves what already exists. It just takes too long sometimes.

At times, it may feel like you are being pulled through a tunnel with the hope of finding the light at the end—only to get there and find another tunnel. You ask yourself, "How many tunnels can I go through and still survive?" Know you are not alone, and eventually a light will glimmer.

The good news is that as you process information and begin to make connections the dots in this puzzle start forming a picture. You won't feel so fragmented. With education and knowledge comes power. You are in a better position to make educated and informed decisions about your own health care, working in a partnership with your doctor.

Taking charge

Another important point to make, and emphasize, is this: Do not accept emotional abuse or, dismissive behavior from doctors. Doctors have a responsibility to treat us with common decency and not threaten us or patronize us.

They do not have to have all the answers or even understand this illness, but they need to treat us as humans. It is not acceptable for them to stress us out, either, but it happens all the time.

Speak up when appropriate. Not every doctor is a good doctor (but assuming you find one, know when to ask for help).

As a new patient, be patient.  It is always frustrating because we want the answers not today, but yesterday. Slow down a little. If you can't, the illness will make you do it anyway.

Ask to be treated symptomatically to reduce the pain, to help with the sleep disturbance, to handle dizziness and balance problems, to rein in the headaches, to control allergies, etc. Once you get a bit of relief, then you'll be in a better position to start using your energy to read and learn.

Try not to let the initial stage of confusion and fear pull you down. Instead, as you add knowledge and connections with other patients, imagine yourself standing in the center of a circle. All the information you need is on the outside edges. As you pull the pieces from the edge toward you, you are in charge and getting continuously more knowledgeable.

Being forced to adopt major life-altering behavior as a result of a chronic illness creates enough trauma. Recognize this and it will make it easier.

Lying in bed thinking of all the things you could do if you could just get up will only stress you out more. It may take a while to learn new behaviors and attitudes. Many patients come from a background of being independent "over­achievers" used to getting things done.

Adapting is difficult—but necessary.

To better days!