Writing With Chronic Fatigue Syndrome

Chronic Fatigue and Immune Dysfunctionbecame totally bed-ridden for a period of time.
Syndrome (also known as CFS and CFIDS) is aOver the years I have mourned the loss of who
debilitating illness. I should know I have it.I once was, but I have learned to adapt the best
More than four million people in the United StatesI can. Although I always had a love for writing, I
suffer with it. It destroys once healthy individuals,began writing from bed when all I could do was
ends careers, and splits up families. The Centermove my hand across a sheet of paper. I started
for Disease Control (CDC) reports that morewith short stories and magazine articles and
people suffer from CFIDS than MS, lung cancerworked my way up to a fiction novel.
and AIDS altogether. Yet it is an often anMy favorite stories have always been romantic
unrecognized illness by people and doctors. Heresuspense, so I decided on it to write. Writing has
are the criteria for this devastating illness:proven challenging but also rewarding. I can work
1. Incapacitating fatigue for over six monthsat home and at my own pace so as not to bring
without feeling refreshed after sleep and with noon a flare-up of symptoms. I am unable to meet
other discernable reasonwriting deadlines or do book tours, but I have
2. Issues with concentration and short-termfound a good publisher who works well with me.
memoryAs a writer, here are some of the challenges I
3. Flu-type symptoms such as achiness, tenderface:
lymph nodes, sore throat and headache- Cognitive issues. Have you ever experienced not
4. Continued fatigue and worsening of symptomsremembering a word or forgetting how to spell it?
after physical or mental exertion which requiresI just did that with the words gamut, vary and
recovery timeexistence. This is frustrating when I graduated
These are the main diagnostic criteria; howeverwith honors and a 3.98 grade point average. A
there are a multitude of other additionalfew hours later, the word might just roll off my
complicating symptoms. These vary from persontongue.
to person and fluctuate per person. It is an illness- Short-term memory issues. The inability to
that does not discriminate. It's a complicated illnessretain information is a big issue. I hear valuable
to diagnosis and treat but also to live with. If youinformation that pertains to my book but I can't
get treated quickly, your chance of recovering isremember it long enough to write it down. After
greater. By treatment I mean, dealing with thefinishing my second book, the book cover artist
symptoms of the illness. There are no knowncalled me and asked me specific questions about
cures.my characters and facts in the book. I had to
Early diagnosis is a quandary for both patient andread my book and call him back.
doctor, especially for those not aware of the- Repetitive issues. Fatigue and brain fog causes
illnesses existence in order to question theirme to repetitively type the same word without
doctor about it. Another reason is becauseknowing it. Also, I substitute one word for
doctors are still not educated about it. Also thereanother.
is no diagnostic test available and a gamut of- Physical symptoms. Lying, sitting or standing for
other syndromes and diseases must first beany length of time is hard. I must take frequent
excluded in order to arrive at a CFIDS diagnosis.breaks when typing. If I work too long, it can
This takes a great deal of time.send me into a relapse and I will be bedridden for
My onset of symptoms began when I was in mydays or even weeks.
early twenties going to college. I went to multiple- Sensitivity issues. Light from the computer
doctors in various areas of expertise. They all saidscreen can be painful. Headaches, eye pain, and
I was overweight and overworked. The severitydry eyes are common problems and are
continued to increase until I later lost my job andaggravated by continual computer use.
ended up in a hospital emergency room with an- Lowered immune function. Because my immune
enlarged liver and spleen and a diagnosis ofsystem is in a weakened state, I tend to catch
mononucleosis and Epstein-Barr virus.the majority of bugs going around. This can
A combination of viruses, not necessarily includingfurther aggravate my symptoms, and it might be
Epstein-Barr, is being studied as a culprit for thismonths before I can write again.
illness. Unfortunately because of the name and notThere are a host of other mental and physical
having a specific diagnostic test, funding is not assymptoms associated with this disabling illness, but
supported as with other auto-immune diseasesfor me these are the biggest challenges I face as
like MS or AIDS.a writer. Writing gives me the chance to escape
I was forced by this illness to give up a successfulmy ravaged body and mind and live pain-free
career as a computer programmer/analyst andthrough my characters.