Bring on "The Parade."

For those of you who do not know me, allow me to introduce myself.  My name is Michele Krisko.
I am a woman who has battled Myalgic Encelphalomyelitis (M.E), which you may know by the regretful name, Chronic Fatigue Syndrome (CFS). I was also diagnosed with  Fibromyalgia (FM).

These illnesses abruptly crashed upon the shores of my life approximately 20 years ago. At that time I was a happily occupied single mother of two sons, a  business owner and charitable volunteer who also managed to vacation frequently and socialize quite regularly.  I was 35 and felt everything in life was going my way. One day I was flitting here and there like a cheerful little bee the next day squashed, flat in a hospital bed with a sea of doctors looking down at me totally bewildered by what had made me suddenly deathly ill.  They were all dressed in "space suits" to protect themselves from this mysterious malady and had secured me in an isolation room.  It was quite a frightful time, though I was so incredibly exhausted I could but breathe, leaving little energy to dwell on the fear of both the symptoms and the environment I found myself in.

After many days of being poked, prodded, stared at, tested and interrogated on seemingly every aspect of my life, I was given a primary diagnosis of ME/CFS and a secondary diagnosis of  FM.  I had only a fleeting recollection of what I had read about these disorders.  Back then, unlike the past 20 years, I didn't spend my time scouring medical literature trying to understand little understood illnesses.  Oh to have that luxury again!  I would like nothing more than to have never met these twin conditions that became my unrelenting, unwelcome and merciless torturers, using my own flesh against me without shame.

Like many when I got a diagnosis I asked "what do we do to get rid of it?"  The answer came with both sheepish and regretful downward glances,"there is no cure.  In fact the only thing we really know is that you have them.  We have more questions than answers ourselves.  We're very sorry."   With that, all but my personal doctor impotently left me laying in the isolation ward moving on to their next patient, who I am sure they were hoping to be of more help to.  It's not easy to be a doctor and not be able to "fix" the patient.

Still, I was fortunate in the doctor I had.  He had known me for a good number of years.  He knew the real me,energetic, bubbly and most always laughing, not this hurting, exhausted lump of flesh laying in front of him moaning in agony.  He decided he would take care of me come what may. He was my OBGYN!  There were no "specialists" in our area.  As a matter of fact I didn't know another person who ever had this disease.  So how did I get it?  The jury is still out on that.  Anyhow, knowing how I got "it" wasn't going to help me at that time.  Sad thing is millions of people worldwide come down with these diseases and 20 years later doctors are still looking at them regretfully, but with no real answers as to how people get "it".

Through the next two years I literally suffered 24 hours a day, every day.  The doctor gave me meds for the pain and also something to help my brain go to sleep.  With these conditions the brain's normal clock and rhythm get stuck and thrown off, making it almost impossible to sleep, sometimes for days, all the while you wish with every fiber of your being that you could be unconscious.   I stayed in that severe state but then in my third year I began to get some better times.  That meant I could go out and be with my friends and family sometimes.  It was such a relief, though I still had enough symptoms and at pretty intense levels, it was so much better than it had been, I could function.  Someone else feeling my "good day" would have been sobbing in the fetal position in their beds, but I had come out of hell itself and any improvement was like a healing balm to my soul.  Unfortunately that's when a new pain started.  A pain in the butt.  I call it "The Parade."  It is a parade that began all those years ago but has kept marching on.  As a matter of fact it is my experience in talking with hundreds of people who have chronic illnesses that they too have experienced "The Parade."
Hmmmm... do you know what "The Parade" is?   

To be continued...