SICK: LIVING WITH CHRONIC FATIGUE AND FIBROMYALGIA SYNDROME, Part II

SICK:  LIVING WITH CHRONIC FATIGUE AND FIBROMYALGIA SYNDROME, Part II

I am not entirely sure when all of this started. It's kind of like trying to figure out if the chicken came first before the egg or "Who came First" on the baseball field. But hindsight is always 20/20 and as I look back upon my life, only then can I remember the strange symptoms I began to have when I was an 18 year old college student. Although I was healthy and rarely sick then, there were some days when my legs felt like lead after I'd climbed the steep hill back to my room from the college's post office after collecting my mail. Though I was slim and in good shape from dancing, my legs felt as if they weighed ten tons, so heavy were they to lift I felt like crawling to my room instead. Once back in the safe confines of my room I'd lie on my bed to rest from my journey, so sore and drained one would think I had just trekked the steepest slope of the Himalayas.

There were days when I woke up so stiff, sore and achy I actually thought I had the flu, but I didn't. One time these symptoms were so bad I collapsed in an exhausted heap while dining with friends in our campus pub and had to be carried back to my room. The college's physician had no idea what kind of virus this was but advised me to stay in bed, which I did. After I recovered I never experienced that kind of fatigue again, or if I did, I paid it no mind.  By virtue of youth's folly and ignorance, any symptoms I had that might have been the harbinger of things to come were ignored or attributed to my leading a typical residential college student's life. Like most kids, I stayed up far too late, ate poorly and partied a wee bit too heartily most of the time. Now I wonder if that was when the chronic fatigue and fibromyalgia began to emerge.

In my early thirties I discovered that I had areas on my legs that were so excruciatingly painful to touch one would think I'd fallen so hard as to be deeply bruised. On close examination there were no bruises, no outward signs of injury, but inside there was deep pain lurking beneath the fairness of my skin that only massage could release and relieve. I ignored it then, choosing instead to attribute these symptoms to a peculiar allergic reaction  that was instantly relieved the moment I took a Benadryl tablet and slept through the night. Now these areas have spread throughout the whole of my body as if seeking unchartered territory. Where once only my legs were affected, my neck, the base of my skull, my arms, shoulders, back, hips and chest are now ravaged by this pain. Little did I realize that these painful tender points were the hallmarks of the illnesses that were to come  some twenty years down the road.

In the last few months, after years of fruitlessly running back and forth to my regular physicians - the internist, Rheumatologist and gynecologist - to find the root cause of my symptoms that might reveal their interconnected nature - a belief I intuited throughout these difficult years - I decided to see a holistic endocrinologist and internist to see if they could find what was really wrong with me. As I suspected, recent tests of my entire bodily systems have revealed a host of medical issues that do scare me. I learned that I was actually exposed to the Epstein-Barr virus that causes mononucleosis and sets the stage for chronic fatigue syndrome. While there is no way to ascertain when I was actually exposed to it, how long it has resided in my system or when or if it would erupt again in full force, at least I now know none of this is "all in my head" as so many suggested. At night, before I drift off to fitful sleep I wonder if my college illness was actually a mild case of Mono. It would make sense given the recent diagnosis of chronic fatigue I received a few months ago. I wonder if the emergence of the chronic fatigue is the reason why I was so exhausted last summer, or the reason why the fatigue I already have with the fibromyalgia seems worse than it was before. I wonder how long have I really been sick and if there was a way I could have stopped their course had I paid more attention to my health and self care. The questions I have cannot be answered. It simply "is what it is" and I have to learn how to live with it.

Living with chronic illness is not something I'd wish upon anyone, including my staunchest enemies, naysayers, competitors and adversaries. Although I am grateful these conditions are medically defined as " syndromes" rather than life threatening diseases like Lupus, the fact remains that I am, in some way, sick and trying to cope with the effects of debilitating fatigue and unrelenting pain on a daily basis. Each day I am forced to define how I feel and what I can do based on my symptoms, which can and do change at a moment's notice, like a sudden storm on a sunny day. This routine is wearing and stressful to deal with because, frankly, I have far better things to do with my time. I have other things I want to address beyond the scope of these chronic conditions, but I can't. They are constant distractions and reminders I'd give anything not to have to address each day of my life.

Until the medical community finally decided to recognize fibromyalgia last year as a "real" condition rather than something psychologically created to call attention to one's self, I have been accused of "making it up", being "a baby, a whiner and a complainer", a liar and an assortment of other hurtful monikers that have served no purpose but to devalue me as a person. Now with proof in hand that I am suffering from two real debilitating conditions there is a part of me that feels good about it. At least now I have proof to show when people attempt to mock me, as much as I can show them articles about the validity of both conditions. Despite the pain and fatigue, this proof is a small victory for me and all the others who suffer from these conditions.