Lupus & Me: Get Serious

Chronic fatigue.  I was embarrassed at this newest addition to a growing list of diagnosis’.  I liked the ones that made me sound like I might be an off duty nurse.  I’d rattle them off and even spell them if the pharmacist or doctor looked puzzled.  Systemic lupus erythematosus is often reduced down to just lupus. You could have systemic or discoid lupus.  I had both.  Discoid gave you lots of undeniable and very visible symptoms, mostly on the face.  Aside from your skin, your other organs were usually spared from attack.  I’ve always been an over achiever. As a young girl, I denied ever being the competitive type.  It was mostly a protective measure for my ego in  case I lost at whatever it was I had set out to do.  Why should this disease be any different?  I didn’t become infected with this disease.  It didn’t find its way into my kidneys and brain on a Trojan horse.  It was me.  The disease sprang from me.  It was part of my DNA.  It was just following orders, my orders.  Go big or go home.

I came to recognize symptoms in their early stage.  This knowledge, more of sixth sense really, came after several years of ignoring signals that something was wrong.  The problem was that lab results didn’t usually pick up my red alert.  Visits to the  Urgent Care explaining to the doctor that the sores in my nose and mouth or hives that sprang up the size of small grapes were not just uncomfortable.  I could handle discomfort just fine.  I would ask them to call one of the doctors on my list–  the standard treatment was high dose of prednisone tapered down over a period of 2 weeks.  Lab tests would be taken that day and again at the end of the steroid treatment.   The team of specialists I saw knew my case and admitted that mine was especially complex.  I was scared and pleased at the same time.  If I was going to be sick, it better be good.  And by good I meant, good like go big or go home kind of good.  You can understand why chronic fatigue was left off the list on first visits to a new doctor.  The doctor would read through the list.  When he would ask if there was anything he missed, I would mumble “chronic fatigue.”  He’d nod and when I saw that he and so many other doctors wouldn’t even write it down, I eventually stopped mentioning it all together.  It was wishy washy.  It took credibility away from the very legitimate condition that had introduced itself into my world.

Over time, the symptoms of chronic fatigue would begin to demand respect.  I know, chronically fatigued?  I’d joke that I’m also chronically averse to exercise and food that is good for me.  I could go on.  Chronic fatigue knocked me off my feet. It seems like this should take care of itself with a few good nights sleep.  You could sleep for the major part of three days and feel the same.  I continued to work most of the time since being diagnosed with lupus. If I stayed home, I felt tired.  If I worked I felt tired.  At least at work, I would be dressed up and could pretend to be the version of me I so wished to be.  If I stayed home I felt guilty–  lazy, even.

The concept of time took on a different meaning.  I don’t wear a watch or have a clock in my office. Time is relative.  An alarm beeps to let me know I have an appointment or meeting in the next 30 minutes. Aside from being on time for something, I stopped watching the clock.  A good day no longer meant a day.  That was too long.  I measured life and success in even smaller increments of time—I had to.  Instead of getting up and knowing I would have a great day, I accepted that if I could sit up without assistance, I was better than yesterday.  If I could sit up yesterday and today I couldn’t, then I told myself, I was better off than someone was yesterday.  I cried.  I gave up.  I had been defeated by the unserious sounding condition of chronic fatigue.  To be continued…..

❤ Estela

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