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How It Feels to Have CFS
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It is our privilege and honor to host the writings of John Herd, including "Epilogue to a Decade of CFS," which we feel is the best description we have ever read about what it feels like to have CFS. As someone who began battling CFS in 1984, I can state, from a very personal perspective, that John Herd accurately portrays the inner experience of CFS with amazing clarity and insight. This article is important because it takes us beyond the strictly medical model, Center for Disease Control, "objective" description of CFS. While a scientific, external approach is essential in diagnosing CFS, ruling out other diseases that cause chronic exhaustion, and in developing a logical treatment plan, it is important for doctors, patients, and the family of CFS patients to understand the day-to-day struggle that Mr. Herd describes so beatifully. - Dennis Gersten, M.D.
by John Herd
Sometimes the continuum of time is measured by clocks and calendars. Sometimes it is measured in accomplishments or the lack there of. Other times it is measured in joys, losses, passions, sorrows, by awaited hopes, disappointments, or by the flow of transient demands. And other times, as is often the case for those who have CFS, it is measured by the ability to endure each protracted moment, stretched by physical, cognitive or emotional pain. When one has an illness with as expansive an impact as CFS there is no continuum because time is measured in all these ways at once. Theories of relativity become meaningless - time fluctuates constantly. Living in a world eclipsed by CFS is like constantly walking on marbles. Nothing remains dependable - not one's cognition or physical abilities, and not the world around you. And as one's abilities decrease even self-reliance becomes a victim to the illness. Days become progressions of endless internal and external struggles. Betrayal of one's self by one's own body and mind is the ultimate betrayal.
CFS leaves one clawing at cognition, trying to get through a kind of drunken or drugged state, through wildly fluctuating levels of exhaustion, and physical symptoms to attain often even a meager level of functionality. Memory, attention, problem solving . . . simple tasks can become monumental. Pain, dizziness, feeling feverish, not just weakness but total physical depletion, decreased coordination, nausea, vision changes. So many symptoms wax and wane and one never knows when the hammer will drop. Life becomes a maximum effort all the time, of coping, doing, trying, and resisting the emotional weight of what we carry. For the uninitiated, a single day like this would be a "sick day." But all too often the person who has CFS has no employer to call and one can't take a "sick day" from life, from family and friends, from the demands of coping for the sake of survival. People who have CFS... they have sick weeks, sick months, sick decades.
On top of everything else that CFS imposes, the illness imposes yet another formidable foe, namely, its being such a medical enigma. While research is uncovering much of its physiology, the cause and underlying mechanisms lie somewhere beyond the frontiers of current basic scientific understanding. In other words, researchers are finding many pieces of the puzzle, but so many pieces are missing they are far from being able to see the picture. Those afflicted struggle to understand what is happening to them. What could impose such widespread havoc upon their bodies and their minds? Most physicians know little about the illness or research being conducted on it. All too often patients are told to go see a psychiatrist as if they are being told to go to hell. But how could a psychiatric illness cause swollen glands, neurophysiologic changes, and so many of the other physical complications? It is no wonder people with CFS wouldn't want to carry the additional label they so often hear - "it's all in your head." Psychiatric illness unfortunately has a societal negative stigma. People with CFS already are struggling to hold onto any semblance of self-esteem without that added baggage. Many, if not most, who get CFS do question this though, and do find their way to counseling, either in search of a diagnosis or to get help coping with their illness, for the drive to understand what is happening and to get better is stronger than any negative stigma could be. Interestingly, it's very often the psychiatrists or other kinds of counselors who rule out a causation of psychiatric origin. There may well be secondary psychological/emotional impact as a result of the insult the illness imposes on the body, mind and entire life, but that is an altogether different matter. So where to turn to next? Often people with CFS turn to research for answers, to medical journals for the most current information, and to networking with other patients for information and support. And often they become more knowledgeable about CFS research advancements than most doctors.
In order to survive one copes the best one can. And yet here lies one of the ultimate personal catch-22s. The better one outwardly copes, the less one imposes the daily struggles on others, the more opaque the mask of coping becomes, the more invisible illness their illness becomes. If we carry our own baggage, people don't recognize what they don't see. So the less we share about our struggles with our disability the less people understand. And even when we do share what we are experiencing, people rarely seem able to comprehend what they don't experience first hand. People view us and judge us in the context of what they see. In turn, our dependency on so many kinds of support all too often goes unmet. Other times the support withers away. Because CFS is an invisible illness, we frequently hear, "You look fine," even when we are internally crumbling. In striving to be positive, we do our best to retain the invisibility of CFS. We preen ourselves to look the best we can, for our outward appearance is often one of the few measures we have left of normal life. And when that question comes, "How are you," the usual answer is, "OK," "Fine," or "Not bad" - for in that constant effort for quality of life we too tend to play down the impact of our illness. If we do share too much of the endless progression of our invisible struggles, people tire of it very quickly, for it naturally can wear on them almost as much as it wears on us. If we transfer to them too much of our hardships or too many demands, we risk infecting them with a "secondary CFS" - not an active physical illness, but an exhaustion from the weight they then must carry. A vital aspect of coping is finding a balance of not complaining or imposing yet achieving understanding and obtaining necessary support emotionally, physically, and logistically. This is a difficult, if not often impossible, balance to attain.
While others' lives are moving ahead in the progression of their lives, often our lives in so many ways seem to stand still as we do our best in our day to day lives as we seek any treatments that may help, and wait for research to find more effective treatments. While we share the joys of others' activities and achievements, it feels as if we are viewing so much of life as spectators from the sidelines rather than as participants in the active world. And as time passes and our inability to partake continues, friends and even family all too often seem to fall away like leaves fall from a tree. We find ourselves watching horizons for hints of the lives we once had, for any path that may lead back to people, activities, places, and the state of good health that were once part of our lives, all of which we hold so dear.
Ten years,
Sea of CFS Struggling to persevere upon the sea of CFS. So many currents become a perpetual undertow. The constant sting of salt in fresh wounds. Drifting, hoping, searching the horizons for distant shores, for a passing ship, for extrication. Trying to remain afloat. Predators of the deep (physical incapacitation, cognitive obscurity, economic ruin, isolation, the myriad of physiologic symptoms, pain, shattered emotions) circling, waiting, ready to strike unexpectedly. Onward, onward, minute after minute, an hour, a day, week, months, years, struggling to reach that remembered beach of health, of self-sufficiency, of a complete life, to again travel upon the path of dreams. An occasional passing albatross, glimpsing down nonchalantly, indifferently, before fading away upon the wind. Too depleted to continue thrashing the waters, sinking, slowly, deeper and deeper, the sunlight's sparkle fading away, the last bubbles of breath wobbling their way to the surface. Cool dark silence - calm. At last the struggle is over . . . only to awaken the next day and start again. May the efforts of a few save so many from the sea of CFS. Copyright J.Herd, 1997 All rights reserved John Herd aka John Friedlich |
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