My Chronic Fatigue Syndrome-A A +A
Monday, September 2, 2013
WHEN Senator Miriam Defensor Santiago announced a few years ago that she was suffering from a condition called chronic fatigue syndrome, I felt a rush of sympathy for her because at the time, my own chronic fatigue syndrome was in full swing and I knew exactly how she felt.
And then, just the other day, I read that Senator Santiago has again taken a leave of absence from the Senate and even postponed her stint as judge in the International Criminal Court (ICC) due to her chronic fatigue syndrome. With my own chronic fatigue already a thing of the past, I can only hope that the Senator, who is by the way a good friend of mine, will also soon find her redemption from this mysterious medical curse.
Chronic fatigue syndrome is not a disease but a condition, or rather a combination of conditions (hence, “syndrome”), foremost of which is muscle weakness (fatigue) that does not go away for weeks, months and even years (hence, “chronic”). It’s mysterious because no one knows for sure what really causes it, and what really cures it. You just feel exhausted all the time, even after a good night’s sleep, and even if you are perfectly healthy with no underlying illness.
And it’s a curse because it hits you without purpose or warning, and you really feel doomed because your days of productivity and happiness are over and you don’t even know what’s going on.
People stricken with chronic fatigue syndrome wish they had cancer, diabetes, tuberculosis and AIDS instead, because at least they could start their treatment and medication. With chronic fatigue, they don’t know what's ailing them. Worse, their doctors don't know either.
When I first had it in 2005 or 2006, I had to look for its name myself on the Internet, and even the Internet at the time had very little to say about it. One doctor actually told me, "You probably know more about chronic fatigue syndrome than most of us."
I had my thyroid hormones (T3 and T4) checked—negative. I had my testosterone levels checked—negative. I can’t remember how much blood they drew from me to measure my levels of potassium (normal), calcium (normal), magnesium (normal), phosphate (normal), Vitamin B-12 (normal).
My doctor looked at the results and scratched his head. I suggested to him, “Maybe I have a cancer that’s hidden somewhere deep inside my body?” “Okay,” he sighed, “if you insist.” So I underwent ultrasounds of my liver, bladder, kidneys, prostate and testes; I had X-rays and CT scan of my chest; I had a full-body bone densitometry, and I subjected myself to the dreadful endoscopy and colonoscopy—all negative for cancer.
I went back to my doctor with the results, not sure if I should be happy (because I had no cancer) or sad (because I still didn’t know what was causing my chronic fatigue). Finally, he took a deep breath and very kindly, very compassionately told me, “Maybe it’s all in your mind.”
I thought, No wonder doctors would never find a cure for chronic fatigue syndrome—they kept denying its existence.
If the exhaustion were only all in my mind, I’d have cured myself the day it first hit me, because I remember summoning all the willpower I had to snap out of it. I tried meditation, yoga (including tantric yoga and laughter yoga), matras, chakras, aromatherapy, deep-tissue massage, etc. and read the Bible, St. Augustine, Gautama Buddha, Bhagavad Gita, Henry David Thoreau, Kahlil Gibran, Eckhart Tolle, Rick Warren, and the Dalai Lama.
And yet the mind had lost its power over body as the chronic fatigue lasted for days, which lengthened to weeks, then months, and before I knew it, I was counting years. Imagine living with something that had no name, no cause, no cure, and no doctor to treat it. All you had were symptoms.
I walked out of the doctor’s office that day with the realization that from now on, I would just fight my chronic fatigue syndrome alone. With the whole medical establishment unable and unwilling to help me anymore, I would be my own doctor and my advocate.
At the time I was trying to finish a big coffee-table book, “Destiny and Destination: The Extraordinary Story and History of Holy Angel University,” which should be launched on March 8, 2008, the school’s 75th founding anniversary. I had no choice but to drag myself to work to do the research, the writing and the layout.
On good days I’d be able to type one to two pages before I collapsed on my chair, totally exhausted. I wouldn’t have enough energy left to preside a meeting, or even attend one. When visitors called on me, I’d pretend to nod and smile, but I was actually too weak to even understand what they were telling me.
On bad days I wouldn’t be able to bend over to wear my socks, or raise my arms to drive the car, or lift my feet to climb the stairs.
And on really bad days I would be too weak to even lift my head from the pillow. So I’d just lie there all day looking at the ceiling and feeling sorry for myself.
My Googling had also led me to an entire catalogue of medical horrors as possible cause of my fatigue, from parasites inside the eyeball to a colony of yeast that grows on the tongue to 100-foot tapeworms living inside the intestine. I became paranoid, hypochondriac, depressed and angry. Why, of all the billions of people in this world, it had to me, and why, of all the illnesses and diseases there are in life, it had to be this.
I was only in my mid 40s, and my life was practically over.
Well, in the end, after a long, slow climb, I was finally out of the pit. There was really no single cure to it because there were different causes and different combinations of symptoms for different people. Some are also more severe than others.
I came to realize also that my condition began in 2005 after I was told I had gallbladder stones and that I might undergo surgery. That really set me on a tailspin of panic and fear, and then chronic fatigue syndrome took it from there.
The doctor who told me “Maybe it’s all in your mind” was correct after all, but only partly: it was the mind that set it off, but it was the body that kept it going. Hence, to stop and reverse the body process, I had to use the same mind that triggered it in the first place.
Every time I felt unable to rise from bed, I ordered my mind to lift my body, one muscle at a time, until I was fully out of bed. It worked. When friends and family called to invite me to go out, I had to force myself to join them because if I didn’t, I’d just plunge myself deeper into my black hole. The book I was writing and its deadline literally gave me the reason to live. I remember praying, “God, just let me finish this book and then You can take me.”
This was how I fought my own private battle. I celebrated all the small daily victories until I could declare, after several years, that the entire war had been won.
To all those who secretly endure chronic fatigue syndrome: Never surrender! Don’t just lie there until, well, until you die there. Find the strength in your mind to overcome it, one small step at a time. And take comfort in the fact that there are millions out there who are on the same journey as you, and that one day, hopefully soon, your suffering will go away. But only if you make an effort.
Published in the Sun.Star Pampanga newspaper on September 03, 2013.