chronic_fatigue_syndrome monee m_e / c_f_s What's wrong with the word "fatigue"? By Mary Schweitzer In the English language "fatigue" means "tired." Drawing it out more, the connation is tired from working. In the public mind, to say we have "fatigue" sounds like we're tired from working. Well, who isn't these days? The "fatigue" that we have--I would identify almost seven varieties myself--is not like anything I ever experienced in my other life. But it is incredibly hard to explain that to people. When you have "walking pneumonia," the principal symptom is extreme fatigue. I can recall my son having it and not even coughing. They don't call it "coughing fatigue syndrome." or "coughing fatigue disease." Any serious disease is going to make you fatigued. But identifying our disease from the single symptom of fatigue translates into "tired for no good reason." The reaction I get from people when I say I have Chronic Fatigue Syndrome (if they have not known anyone else with it--increasingly, I am finding people have known someone with it and do know it is serious)--runs the gamut from "I knew you were working too hard" (NOT! I was ALIVE!!!!!) to "Yeah, I've been tired lately too" to "Well, when you get a few weeks of rest you'll be fine again" to the absolute worst, at a cocktail party, "Oh, how au courante." Compare that with the reaction I get when I say that I have CFS, but then qualify it by saying the name is stupid but it's actually a very serious neurological illness, resembling MS. Much different reaction. I shouldn't have to say, "the name is stupid." But I do. There is another, more insidious problem with the name. The insurance companies intertangle these three phrases in their press releases and glossy brochures: "chronic fatigue," "chronic fatigue conditions," and "chronic fatigue syndrome." If you know how to read subtexts, this is a beaut. The subtext is--tired like the rest of us but always complaining about it. Goldbrick. Lazy. Add fat and female and boy do you have an incendiary combination. Add the subtext of racism and see how difficult it is can be for an African-American or Hispanic-American to get respect for this disease. The implication from insurance companies is that we are cheats; the implication in the outside world is that we are lazy. Finally, if you look at any pop chart for "how to diagnose depression," what are the top criteria? (1) Unexplained fatigue; (2) trouble sleeping; (3) unexplained aches and pains--and what is one of the principal recommendations to people suffering from mild clinical depression? Exercise. Well, that's the worst thing you can do if you have this disease, because unless you are very very careful, you switch into anaerobic metabolism quickly and can do real damage to your body. Many people with chronic fatigue syndrome cannot use a stationary bike for longer than 2 minutes without shifting into anaerobic metabolism -- and crashing into worse symptoms for up to nine days afterwards. But GP's and HMO gatekeepers and friendly neighbors and family play pop psychiatrist all the time and say--Oh, you wouldn't feel so fatigued if you would just get out and get some exercise, dear. So I hate that name. I hate the word "fatigue." For that matter, I hate the word chronic. It has the connotation "chronic complainer," right? "All the time." Whining. Whining about being tired. Can't suck it up, eh? OR--yeah, well, you brought it on yourself, you overachieving yuppie. (Never mind the people who get this who are poor who are hardly "overachieving yuppies" but are working two jobs to support their families). OR--oh, don't be so self-absorbed. Go get involved in something. Go take a good long walk. Too easy for Bryant Gumbel and Jay Leno to crack jokes about people with chronic fatigue syndrome. Do they make jokes about people with multiple sclerosis? Well, it's funny as a rubber crutch, guys. The name "chronic fatigue syndrome" makes me feel I have to scream to the outside world: "I am not a liar. I am not a cheat. I am not lazy." I loved my life. I was alive. This is not a vacation. I'm not "resting." It takes physical effort for me to do everything I continue to do. This is not easy, it is hard. So, that's why a lot of us hate the word "fatigue". http://www.cfids-me.org/marys/termfatigue.html .. Sadness, Frustration, and Depression By Mary Schweitzer "...Winston Churchill used to talk about depression as the little black dog that followed him, sometimes far away, sometimes getting closer. I think all PWCs (people with CFIDS/CFS/M.E.) know that little black dog. I do. The irrationality of thoughts of suicide. The feeling that there are no windows, there are no doors. We who are PWCs struggle with three emotions: sadness, frustration, and depression -- they are not the same, and the answer to them is not the same. But when we talk about them, doctors and friends seem to think they are the same. Secondary depression is common in this disease, not merely because it is depressING, but also because the disease affects seratonin levels. So many of us take an SSRI or other medication to help keep the levels from being depleted. There is also a vicious circle with sleep. Sleep disruption, the experience of unrefreshed sleep, is one of the main hallmarks of this disease (along with significant cognitive dysfunction and enormous fatigue). Studies have shown that alpha waves intrude inappropriately when we try to sleep; we never reach the levels of deep sleep. It is in deep sleep that seratonin is replenished. So there again, a reason for low levels. But SSRI's tend to worsen the sleep disruption -- so many PWC's also take small doses of anti-depressants such as Doxepin or Klonopin -- doses so small that in some cases you need the liquid form and an eyedropper. It helps with the sleep. However, since most of us also have problems with neurally mediated hypotension (NMH), we have to be careful about anything that lowers our blood pressure. So you can't take just anything at night, and you have to take the smallest dose that works. Hence beginning with the eyedropper. NMH can lead to what feels like panic attacks -- but they are not. People with NMH cannot stand still for any length of time -- their blood pressure drops and they'll pass out. Standing in line, particularly in the heat; taking a shower -- these can trigger the NMH reaction and the patient feels a sudden, overwhelming need to SIT DOWN RIGHT NOW. Which feels like panic. It is a sense of panic -- your body knows if you don't do something you will fall. SSRI's won't help that type of panic; only treatment for, and adjustments for, the NMH can do any good. We can be afraid of places like shopping malls -- but not because of depression or some other psychological reason. Rather, our balance is very bad (a quick test for CFIDS involves trying to stand with your eyes closed and one foot in front of the other, arms outstretched; PWC's can't hold it for a second). We are capable of lurching into things and people. Bright eyes [sic] hurt our eyes; loud noises are also painful. And if you get confused easily, you can get lost. Then, in shopping centers, you find yourself having to stand in a long line, still. It is all indescribably unpleasant; again, that feeling of panic, have to get out of here -- but it is not irrational in any way. It is a direct response to the symptoms of the illness. (One solution is to use a cane; a better solution is a wheelchair.) Exercise helps depression -- but if you are very ill with this disease, you cannot exercise. We shift from resting to anaerobic metablism in two minutes. Exercise brings on a terrible relapse the next day, sometimes for a week. If it is primary depression, exercise will make you better. If it is CFIDS, exercise makes you very much worse. [Ironic that many of the PWCs I knew, such as myself, were physically active -- aerobics, nautilus, downhill skiing. Any of that would make me feel better. How I wish I COULD!] I am being treated for, and have made adjustments for, NMH, so I don't have those panics any more. And I take take medication to prevent depression caused by low seratonin; I take medication to help me sleep. I don't have the irrational, unspeakable, CHEMICAL depression that I experienced at first with the disease. But I still get sad. And that is natural. Of course I am sad. I am sad when my husband is on a business trip to a resort in Florida and normally I would have gone with him, but I was too sick to go. I am sad that when I do go with him, I am not the energetic, stylish person that was ME. I am sad when someone asks if I have finished a research paper I started three years ago, and I have to say no -- I have not been able to work on any research in three years. I am sad when I go to a Villanova game and see the students there, and realize that there aren't very many left who would have known me, and in another year or so, there won't be any at all. I am sad when I hear about an inaugaral conference in institutional economics at Washington University in St. Louis. I would have gone. I probably would have given a paper. But I can't even go. It is out of the question. I see it slipping away from me. I am sad when there is a job opening I had my eye on for a long time, and I cannot apply. I am sad because another ski season came and went, and I couldn't go. And because I didn't go, neither did the rest of the family, which also makes me sad. I'm sad because the sun is finally out again and there's a mild wind blowing and my Irish setter is bouncing off the wall she's so bored, and I'd love to take her for a walk to the park and throw the ball with her. No can do. I am sad when I hear all the stories of those who are suffering with this disease, and do not have the resources I am fortunate to have -- a family, a husband with a paying job, health insurance, long-term disability. I am sad when I read of yet another PWC who has lost the battle, committed suicide. And I'm frustrated. There's so much I WANT to do, so little I CAN do. I want to be well! I get used to it, accept it, make the best of my life here on Internet -- and then something happens, and I want to SCREAM that I want to be well. I want to WALK. I want to DRIVE. I want to DANCE. I want to feel normal, just for one day. And the PAIN days. I am lucky not to have too many of those. The constant ache gets to me, but it is the days with the pain, when you have to close the curtains and turn out the lights and just lie there, listening to a movie and imagining the picture. Just surviving through that day to the next. You spit at the wind and scream I don't want this any more! And I'm frustrated when I have to constantly face my disability, constantly describe what it is I can't do, constantly worry about missing a form or a phone call, to keep getting the 3/5 of my former income from a disability plan I paid into, along with my employer, for a decade. I'm frustrated when I see on tv some thoughtless young announcer chirping that aerobic dancing can cure chronic fatigue syndrome. My God, child, don't you understand how badly I want to exercise? I'm frustrated when I go to a ballgame and they've sold the handicapped seats to highrollers and an usher yells at me for just sitting in the nearest empty seat. I'm frustrated that I had to miss events at the Olympics because the accomodations for wheelchairs were not good, and some distances were just too far for me. I'm frustrated that I have to ask family members to do things I used to do for myself. That I have to depend on others to go anywhere because I can't drive. That I'm 45 years old and less independent than my 75-year-old mother. It is okay to be sad, and it is okay to be frustrated. But if I dwell on the sadness and the frustration; if I think too much about "what if" I never get any better; what if I get worse -- well, SSRI's are not going to fix that. If I worry too much over some of the situations I know about, some of the people I care about -- it's too much, too overwhelming Being on-line, on discussion lists for people with this disease, really helps. Being able to SAY it outloud, to other people who understand, really helps. Really helps. And there's something about internet -- I see all my friends out there on the 'net, so compassionante and kind, so interesting and varied...and then I don't hate myself so much for having CFIDS...maybe the bad chemical days and then the frustrationn/sadness days slam into each other, or you do take a peek behind that curtain marked "future" and are frightened by what you see...As for sadness -- I think it's okay to be a little sad. In fact, it's normal. A lot of what I do -- like this, or watch movies, or be with my family -- distracts me from the sadness, but I think the sadness will always be with me. On good days I trade it in for inner peace instead. Hard for a very active person to accept quiet, but I'm learning..." http://www.cfids-me.org/marys/sadness.html . 041222 ... monee myalgic_encephalomyelitis . 041223 ... monee in_memory_of_those_who_have_died . 041223 what's it to you? who go blather from