My Journey with Chronic Fatigue Syndrome: In the beginning

   I've always envied all the people around me that have had 'normal' lives.  The fact is, even when I was, I never really felt it!  I've always envied those women around me that seemed to be able to 'do it all.'  They were up early on Saturday's, and had the energy to play with their children, all while working full time and still keeping up with their homes and their lives.  

   Looking back, I really wonder how long I've had the condition that I have?  Is it something I was genetically predispose to acquire?  I should have almost seen it coming.  But who knew?  How was I supposed to know?!  

   In elementary school, I seemed to need far more sleep that most of the other kids my age.  I remember in Junior High, getting silly strange pains in my knees or my hands, wondering what I possibly did to injure them, but not knowing how. Then the pains would disappear as quickly as they started.  


   In High School, I definitely didn't have the energy my friends did.  I knew it, but certainly wouldn't admit it.  I'd come home at 3PM after school exhausted, didn't even play in any sports, and would barely be able to wake up from my daily naps to make it to my job at 5:30PM.  Looking back, I also now believe I had my very first CFIDS related 'episode' when I was a senior in high school.   The flu-like illness I had experienced was never found to be mono, or influenza, or strep, etc.  I recall how the doctors tried to tell my mom I was anorexic.  Crazy!  I had always eaten like a horse, even though I probably didn't weigh much more than 100 lbs.  I remember the strange rash I get on my face yet today when I relapse in my sysmtoms.  (Yes, I've been tested for lupus many times, always with negative results).  But, after a couple of weeks, I returned to the same normalcy I had always known, simply not as energetic as everyone around me!

   In my early twenties, after getting married, I recall feeling achey and sick to my stomach often upon finally retiring to bed after long days.  My poor husband!  Looking forward to snuggling in bed (<;) with his new wife at the end of a long day, only to find her not feeling well.  Something that was unexplainable and seemed almost inexcusable at the time.   In my mid-twenties, I began to actually feel very embarrassed about not being able to keep up with life like all the women around me.  I never felt as if I got enough sleep, always had a hard time waking up in the morning, and was always late to work.  I simply felt as if I wasn't the wife and grown woman I had always hoped to be.

  

   It wasn't until my 30th year of life, during my pregnancy with my youngest,  that I began to question my obgyn doctor.   "What the heck is wrong with me!?"  There was the explanation that I was a pregnant mother with two other young children, of course I'd be tired.   "Not like this!," I'd say and think, but the doctor just never understood what I was trying to explain.  Now, I felt I couldn't be the mother I had always desired to be. 

   After my son was born, I again developed that crazy rash, the worst I had ever seen, on my face.  Within the week, I began to feel very feverish and ill.  I experienced pain in my kidney areas as well.  The doctor gave me a course of antibiotics, explaining that I likely had a bladder infection due to the delivery, episiotomy, and stitches from child birth.  Really not sure if he ever even tested me for this, I was happy for the drugs and an explanation.  I was eager to get on with my life and get back to taking care of my new sweet baby and family.  I was also given some topical acne cream, told the rash was likely hormone related adult acne.

   Throughout the next few months, the rash got worse, not better.  I was then told I possibly had allergies.  After switching laundry detergents and watching what I ate, the rash persisted.  Eventually I was told I must have a condition called Rosacea, and given topical medication to treat it.  Much to my disappointment, this also didn't to help any.  I was unable to fix the new ugliness that graced my face!

   Within a couple months time, I started experiencing joint pain.  Oddly, it started in only one knee and a knuckle.  I didn't think much of it, until, a rash started spreading over my entire body after anytime spent in the sun.  Soon again, the flu-like symptoms we're back.  This time, however, they hit me like a mac truck!  I was found to have the epstein barr virus in my bloodwork, thus told I had mononucleosis.  An explanation, maybe?  Unfortunately, this seemed to be the catalyst that sent my body and health spiraling out of control for the next 3 years!

   With in the month I felt like I was being poisoned, slowly and steadily feeling more and more ill.  I felt like I was being cripled, my joint pain seemed to be increasing in intensity week after with pain spreading to every square inch of my body.  It hurt to wear shoes.  My feet hurt under the weight of my bedsheets.  I slept 15 hours a night, yet still needed naps.  I became too weak and fatigued to do simple tasks such as showering without having to rest afterwards.  My body would shake and quiver as if I had a very high fever, but my body temperature would be lower than normal.  Sometimes my limbs, checks and lips would go numb.  Other times my hands would cramp so badly they'd even stay in the position of holding a cup, even after I put it down.  I had heart palpitations.  My body felt so heavy and I'd often feel faint after standing too long, moving too fast or doing too much (which wasn't really much at all.)  I had head aches more severe than I'd ever experienced before.  The light from outside, even on a cloudy day, hurt my eyes.  My body hurt so badly that my children were unable to sit on mommy's lap anymore.  "What's wrong with me?" I thought!  "Am I dying? Help!"

   I was desperately ill.  For the next year and a half, test after test, referral after referral, doctor after doctor, specialist after specialist, couldn't seem to find a positive result to what could be causing my unrelenting illness.  I was tested for lupus, lyme's disease, multiple sclerosis, rheumatoid arthritis, thyroid and hormonal imbalances, hepatitis, many infectious diseases, food allergies, gastero-intestinal issues, etc.  I was desperate to get my life back, but no one could help!  I still remember, like it was yesterday (though it was nearly 10 years ago!), the day my doctor literally patted me on the back with one hand, grabbed my shoulder with her other hand, and told me, "I'm sorry, but you have Chronic Fatigue Syndrome.  You are going to be sick for a very long time. I'm sorry, but there's nothing more we can do for you."  (I was then given some anti-depressants to help me cope.)  My rock bottom... I felt utterly and completely hopeless!