Chronic Fatigue Syndrome

By Molly McCann

I don't know why they call it Chronic Fatigue Syndrome. It sounds so innocuous. They should call it Chronic Exhaustion, Fatal Fatigue, something serious sounding. It is fatal: there is a high incidence of suicide in the population that has CFIDS (Chronic Fatigue Immune Dysfunction Syndrome, its other more proper name in the research community, or Myalgic Encephalitis as it's called in England). People kill themselves because they are too tired to cope with the daily chores of living, in too much pain, so depressed from living a shadow of their former lives that they just give up. Some days I am so tired I think I would be too tired to kill myself if I wanted to: I don't have a will, and I feel too tired to write one.

I got sick suddenly, mysteriously in October 1991. Maybe it was mysterious, maybe it wasn't, I still don't know. I am never sure of anything anymore. What I know is I had started taking Prozac in September. My therapist, whom I had come to love and trust over a year and a half, said I seemed too depressed for someone who had the kinds of wimpy problems I had, just average crappy childhood stuff everyone had. So I probably had bad brain genes. My mother and sister had both tried to kill themselves and been locked up in the loony bin, so I thought sure, why not?

I am the kind of person who wants to be natural but is a little too lazy and indulgent to actually be natural a lot of the time. A pill sounded easier than something else, like my oldest friend's homeopathy or flower remedies. I read about them but 36 remedies sounded like me. I tried several, but nothing clicked. So I started on Prozac. After 2 weeks, I still wanted to kill myself and God told me to double my dosage. (Don't ask. Alright, I don't know if it was God or me talking to myself. "I can't stand this feeling. OK. So take more" "Was that God talking?" Maybe my therapist was wrong and my problems aren't that wimpy). Anyway, I doubled up. Immediately the world seemed like a better place. Colors were brighter, the grass was greener. And not just on the other side. On my side too. It was a brave new world. I loved it.

I loved it so much, I decided to get the small breast augmentation I had wanted for about 5 years, ever since I had a friend who had Perfect Breasts. Actually, she had a perfect body and a perfect house and a perfect job and a perfect bank account; her husband was the only less than perfect thing about her. He was ok, just not great. That's what I thought about her at the time, anyway. Even though my life was supposedly more spiritual than all that, I had a sly yearning for all the material girl successes too.

So, on my newly happy Prozac Nation outlook, I went and got my boobs done. My sweet partner in life, who was away at the time, was not very happy with the idea, but he was a guy who didn't believe in interfering — it was my body after all. How I wish I had trained him to be a little less of a feminist.

On October 5th 1991, I got my new silicone breasts. It was one month before the moratorium on breast implants was declared. The FDA was keeping it a secret that breast implants actually harmed hundreds of thousands if not millions of woman.

I was now a small C cup. Before my surgery I weighed 123 pounds with curvy 37" hips (the bane of my existence) and pert A cup breasts. Well, not as pert as when I was 20, I had crossed the 40 year old line, still galloping. I just wanted some balance. I was tired of walking down the street with a girlfriend who wasn't as cute but had big boobs and every man for miles had his eyes glued on her chest. Somehow that was not only unfair, it was threatening as well, especially now that I was older. Look at me, I still exist! Don't you like me? It didn't matter that I had a boyfriend, that I was loved — ah, perhaps, I didn't love myself, that was the rub.

After October 5th, I loved my little body. My top and bottom was a perfect match for the first time since I was twelve.

I didn't feel perfect, unfortunately…my implants had been shoved into a tiny pocket under my breasts with so much force I kept waking up trying to grab the plastic surgeon's hands. He had promised me I would have only 10 per cent chance of having nerve damage. I was a winner: I had nerve damage. My guess is that way more than 10% of woman have nerve damage. What kind of damage? For weeks, I had to shower with my hands cupped over my breasts so the water wouldn't hit them because it felt like they had been napalmed. (As I imagine Napalm, I have to confess). After a long time that feeling went away, leaving mostly numbness. What had once been a wonderful, deeply erotic sensation in my nipples had turned to a feeling that said don't you dare touch these! That sensation has never left. And since, face it, guys are going to touch if they look, better not even let them look, in the end. How sad to not even want my sweetie to look at them for fear he will then want to touch them. Gone was all sensation of pleasure and left was a feeling that crossed pain and numbness. The left breast had — has- more of both, but both are mere shadows of there former glories in the sensation department.

For five weeks following the surgery, I ached all over, like an intense case of the flu. My surgeon said some women ached in their chests afterwards (well, of course they do! you nut), but this was a rare side effect. In fact, he claimed to be unfamiliar with it although he had performed thousands of implants. I believe my body was either demonstrating a profound reaction to the anesthesia or more likely, an allergic-type response to the implants themselves. Years later, I found that silicone, both the clear jelly-like substance inside and the rubbery sheath that contained it, had been examined for years by Dow Chemical as a chemical warfare agent.

And I had actually paid a large sum of money to have it implanted between my breast and my chest wall. Little did I know what sabotage I had wrecked upon myself.

The aching retreated in its most severe form, but I had been stricken with a deep malaise, a fatigue I can not even try to explain or describe. It was bone deep. I had been running, just two to three miles a day, but now I could barely crawl up the small hill where I lived for a walk. I forced myself. Friends assured me I needed exercise, to sweat the toxins from the anesthesia out of my body. I had to nap two or three times a day. I felt like I was losing my mind, literally: concentration, language, word memory, attention to detail, the ability to sequence and organize — all of these started to abandon me. It was like my mind had just decided to go on a vacation without informing me when it would be back. I was scared. More than scared, I was exhausted and my whole body hurt.

The ensuing years have been a whirlwind of doctors, both allopathic and alternative. I took thousands of pills, from hormones and pain medication to Chinese remedies I couldn't read or pronounce. I saw three different Chinese doctors over the next 12 years, 4 homeopaths, 5 acupuncturists, half a dozen chiropractors. Natural doctors who told me to stop taking all medication, "regular" doctors who pushed pills because they had no other answers: pills for pain, for concentration, for insomnia, for depression. There were times I felt like a walking chemical factory. I wondered how sick the pills were making me. I changed course, went drug-free. My blood tests were frustratingly normal. Nothing seemed to help.

I tried energy medicine, joined support groups, and endured various odd diets, allergy shots, "Meyer's cocktail" infusions. I drank peroxide, lay in decompression chambers, soaked in fiery hot baths with ginger and clay. I was told to eat raw ostrich breast, to eat nothing but fruit and vegetables, nothing but vegetables and organic meat. I juiced, I fasted, I ate pizza. I felt worse and worse whatever I did. Clearly my body was becoming intolerant to all kinds of things like perfume, diary, grains and food additives. Maybe it was bad body genes in general, or too much Wonder bread as a child. Maybe I wanted to be sick. Maybe it was a spiritual failing, a deep lack of faith. I had no idea.

After three years, I gave up on the implants. I knew they had to go. I should have had them out the first month, but I kept hoping something would make me magically well again. Reluctantly, I underwent another costly surgery, another battle with the surgeon's hands. They returned the implants to me in a little paper sack with a glassine window. They were no longer crystal clear, but deep yellow, like lemon Kool-aid. The new surgeon, who, just like the old surgeon, said that these implants had nothing to do with what was wrong with me (or maybe nothing was wrong with me, they seemed to imply?) explained that although the sheaths had not ruptured, the silicone sheath was a membrane and my plasma had crossed the membrane and stained the silicone that color. I remember looking at him thinking "if my plasma crossed the membrane, is any of that silicone floating in my blood, coursing through my body, this chemical weapon?"

After the implants were gone, there were some small changes. The swollen glands I'd had for three years in my armpits and throat were gone. So was the red, sore throat. But the exhaustion and deep aching in my muscles were still there, old friends now, like a coat I wore in all weather, am still wearing 16 years later.

The farther into the chronic fatigue journey I traveled, the more jaded I became about easy answers. I developed a resistance to listen to "new answers", afraid I would venture down a costly road yet again and return covered with dust from my trip and little else. I almost cringed when I heard of yet another multi-level marketing product that sounded like snake oil in all it will cure. I have taken more of these products than I would care to admit. I have felt desperate at times.

What IS CFS/CFIDS? I don't know. I have a theory; the researchers have many, many theories involving mostly involving stealth viruses and the heart and brain. I think it is many illnesses. In my case, I suspect it is an auto-immune disorder brought about by the breast implants. Maybe a virus played a part. It doesn't matter. It seems to be here to stay.

What troubles me the most, of course, is that I brought this illness on myself. Like an alcoholic who gets cirrhosis, or a person who eats themselves into diabetes, I feel at fault. I wanted something so silly, so superficial, to look more perfect, a little more balanced, less like I was and more like those girls in the movies and magazines. How could I give up my whole life for something so mundane? How could I sabotage my well-being in such a terribly organic way?

On the other hand, it bothers me to take responsibility for having this disease, for "creating" my illness and for not knowing what I'm getting out of it, a la The Secret and the laws of attraction. Perhaps I am even lazier than I thought. If I did create it, what am I trying to learn from it? What is there to learn regardless of responsibility, of where the illness came from?

CFS tends to strike very active, type A people. Type A is not a good thing to admit to be in this mellow age of higher consciousness, but that's what I tend to be: somewhat competitive, critical, impatient, risk-taking. I think perhaps I was born type A, or maybe my placement as middle "lost" child helped push me into it. I joke that I got my love as a child the old-fashioned way, I earned it. I was the kid who helped my mother. I still have an overwhelming need to help others even when I can barely tend to myself.

For years now, I am aware of needing to learn to just be, rather than to prove how well or how fast or how much I can do, but this is harder than it sounds for me. CFS does not allow you to do a lot anymore, even if you are a mover and a shaker, the kind of person who says " if you want a job done right, do it yourself", or "it's easier to do it myself than explain it". I spend more time meditating, trying to make myself slow down and relax, trying to stop my tendency to busyness. Doctors who treat CFIDS patients continually remark on the push-relapse cycle patients tend to experience, where we push beyond the energy envelope to jump some hurdle in our lives, only to fall back exhausted with even worse symptoms. One of my largest lessons in life is learning to let go of wanting to do it all and wanting to do it perfectly.

I read of cases of miraculous healings, stage 4 cancers healed with prayer, imagery or the Budwig diet and I question myself: am I just too cynical, do I quit too soon, will my miracle ever come? Or is it my work to develop perseverance in the face of adversity? I do persevere in continuing to hope for an answer, my own miracle one day. Or am I to learn to sit back and relax into the I that is well, not my body, mind or heart, but the real "I', the Consciousness of my soul, who is not sick and never was?

I would like to say that I have learned to coddle myself, to rest, to let my body be the way it is, but I still fight it. I cling to the hope that someday I will be free of this crushing fatigue, if only I can learn to love myself enough. Meanwhile, I try to learn the other lesson: acceptance. This is what I aim for today, to rest a little, to watch the birds, to drift awhile, my Self floating on the river of Life.

Reverend Molly McCann, is an ADL Minister, and an EFT Practitioner and Counselor. She lives in Gainesville, Florida where she has been the full-time caretaker for her husband who suffered from Alzheimer's Disease until his recent death in June 2007. Molly is an ardent feral cat advocate and supports Trap/Neuter/Release with Operation Catnip. She can be reached via email at: Mollycann@aol.com