Suzan L. Jackson, Writer
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My On-Going ME/CFS Journey
by
Suzan L. Jackson


"I have no idea what's wrong with you.  Good luck." The rheumatologist turned and strode out of the room, leaving me sitting on the exam table in my paper gown, struggling to hold back tears.  I had waited three months to see this specialist and felt a crushing disappointment at still having no answers. 

My ordeal began on March 2, 2002.  On March 1, I had a day filled with errands, housework, playing with my kids, and exercise: a typical day for me.  That evening, my throat began to hurt.  I woke up the next morning with a severe sore throat, aching all over, and exhausted.  I figured I had the flu, only this "flu" never went away.

After several weeks with no improvement, I went to see my doctor.  He ordered blood tests for the most common culprits:  mono, Lyme disease, and a basic blood analysis.  The good news came back:  everything looked normal.  So why was I still sick?

I spent the next twelve months seeing various specialists and undergoing additional blood tests.  One friend joked that my exhaustion was probably due to having so much blood taken.  That year passed in a blur of days spent lying on the couch.

Meanwhile, life went on.  My sons still had to be taken to school, my family still needed to be fed, and the flurry of activity that accompanies two young boys continued around me.  My physical symptoms made these normal daily activities almost unbearable, but the emotional strain of not knowing what was wrong took an even greater toll.

At first, I behaved as anyone would when stricken with a bad cold or flu.  I spent most of my time on the couch or in bed, not worrying much about getting anything done.  As any busy mother knows, though, you can't just drop out of life for very long.  I didn't feel any better, but we needed groceries, the laundry was piling up, the house was a mess, and my 4-year old son was getting bored with so much down time.

I did what I had to do to keep living my life.  I often required ten hours of sleep a night, plus an afternoon nap just to get through the day.  It took all of my energy to do the basic tasks required of me, with nothing left over for myself, my children, or my husband.

Meanwhile, I continued to search for answers to this mystery.  My doctor referred me to an infectious disease specialist.  I was astounded and terrified to find out that the first available appointment was in three months.  I had hoped to be well by then!  How could they expect someone to wait so long to see an infectious disease (ID) specialist?  In a panic, I called every ID doctor in our area and took the first appointment I could get:  six weeks away.
And so began a long series of waiting periods.  I found that most specialists in my region had 2-3 month delays for appointments.  It was agonizing to wait each time, not knowing what was happening in my body or how it might be affected by time.

Each long-awaited appointment ended with the same ambiguity and letdown.  The specialist was usually as baffled as I was.  Some would order more blood tests; others just gave up and dismissed me.  The blood tests were all normal, and my symptoms didn't seem to exactly fit any known ailment.

My symptoms waxed and waned for a full year.  Some days, I felt almost normal again and was sure the ordeal was behind me.  On other days, I was so sick I could barely take care of myself, let alone my family.  

The pattern was becoming familiar by now.  A good period would end suddenly with a sore throat, just as this illness had begun originally.  I'd be horribly ill for days or weeks:  sore throat, aches in my legs and back, exhausted no matter how much I slept.  Then, gradually, I'd begin to feel better again, never fully recovering but sometimes feeling more like my old self.

By my 1-year anniversary of becoming ill, I was in despair.  I was in the worst relapse period yet.  A full year had passed, and I was no closer to an answer.  It seemed that all possibilities had been ruled out.  

There was one diagnosis I had heard of vaguely but had never seriously considered - :  chronic fatigue syndrome.  I thought this was a trashcan diagnosis, something doctors said when they couldn't find the "real" cause of your symptoms.

I was out of options and had nothing left to lose, so I dragged myself off the couch and over to the computer.  I typed "chronic fatigue syndrome" into a search engine to see what came up, fully expecting all sorts of vague and non-credible results.  What I found astonished me.
The first site to come up was the Centers for Disease Control (CDC).  I clicked to the site and found an official CDC definition of Chronic Fatigue Syndrome, also called Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and myalgic encephalomyelitis (ME) outside of the U.S. For the first time in a year, I read a list of symptoms that matched mine almost perfectly. That the CDC recognized and had defined this illness stunned me; I didn't realize it was something medically valid.

The next day, I went to the public library and looked for books on ME/CFS.  I found two and checked them out.  Back home on the couch, I started reading the first one, a personal story of one man's 15-year struggle with Chronic Fatigue Syndrome (and his wife's as well).
As I read, the tears ran down my face.  It was like reading my own history of the past year.  He was fine one day and sick the next.  His symptoms ebbed and flowed.  Doctors had no idea what was wrong with him for years.  His and his wife's stories fit my own so well that I was certain I had found my answer.

The second book was written by Dr. David Bell, who specializes in ME/CFS.  He had treated many patients with this disease.  His book filled in some missing medical information for me.  Although its cause is still a mystery, ME/CFS is thought to be an immune system disorder, where the immune system over-responds to some trigger (often an infection) and remains dysfunctional. It is known to affect the immune, neurological, and endocrine systems in particular. 

Its effects are a vicious cycle.  One of the major symptoms of ME/CFS is unrefreshing sleep.  Research has shown that people with CFIDS don't get deep-stage sleep, no matter how many hours they may sleep.  This sleep deprivation causes additional problems, including disruption of normal hormone production, which creates further sleep dysfunction.

Dr. Bell explained that although blood tests appeared normal with ME/CFS, there were some subtle abnormalities.  I pulled out all of my blood test results and pored over them.  The subtleties described in the book matched my results perfectly.

I had recently found a new primary care physician and now made another appointment with her.  I went into her office, armed with my library books, and said, "This is what I have!  Why didn't anyone tell me?" She smiled and said, "I did mention Chronic Fatigue Syndrome during your first visit, but you didn't seem ready to accept it as your diagnosis.  Are you ready to try some treatments now?"

I'm very fortunate to have stumbled onto this wonderful doctor.  She's knowledgeable about ME/CFS and has treated other patients with this debilitating disease.  I've since learned why no other doctor was able to diagnose me during that long year.  

ME/CFS is not well understood, even by the medical community.  Its cause is not yet known, and its symptoms - often affecting women - are frequently dismissed by poorly informed doctors.  I've spoken with many other people with ME/CFS who were told the illness was "all in your head."  This attitude by medical professionals mirrors the situations with multiple sclerosis and lupus before they were widely understood; both of these are also autoimmune diseases that affect many women.  I was lucky to be diagnosed in only a year; I know many ME/CFS sufferers who were ill for 5, 10, even 15 years before finally getting an accurate diagnosis.

The name itself - Chronic Fatigue Syndrome - erodes the credibility of the disease.  Although fatigue is only one symptom among many, it is highlighted in the name, with no medical terminology present.  Who in this busy modern world isn't tired much of the time?  The name is trivializing and misleading.

 ME/CFS affects more than a million people in the U.S., with women almost three times more likely to have it than men.  This makes ME/CFS 40 times more common in women than HIV and 15 times more prevalent in women than lung or breast cancer.  Population studies estimate that 75 - 80% of people with ME/CFS are undiagnosed and untreated.

As I said, I am fortunate to have a doctor who recognizes and treats ME/CFS.  Although there is still no cure, my doctor has helped me to better manage my illness.  I now take medication that increases serotonin production, allowing me to get more of the deep-stage sleep I was missing.

Most importantly, I've learned how to manage my activity level to better avoid the "crashes" or relapses that characterize ME/CFS.  The CDC describes this symptom as "post-exertional malaise," and some experts refer to it as an intolerance to exercise. This is a symptom unique to ME/CFS.  It's as if there's an invisible limit to the amount of activity I can tolerate.  That limit changes day to day, and I don't usually know when I cross it until it's too late.

If I am too active, the result is a "crash," a sudden worsening of my symptoms that can last anywhere from several days to several weeks.  Some days, just going to the grocery store may be too much for me.  On other days, I'm able to take a walk or weed my garden or push the vacuum cleaner (but not all three!) with no trouble.

The most difficult part of this is that I'm not incapable of exercise or exertion; I just pay the price later if I do too much.  I was feeling pretty good this fall and thought I understood my limits when a hike in the park with my two boys sent me into a crash that lasted two weeks.  Was it the hike alone?  The combination of the hike and some housecleaning I had done the day before?  I don't know.  I just have to rest a lot and carefully monitor my activity level.
I'm learning how to manage my physical symptoms, but the emotional impacts of this disease have taken me on a rollercoaster ride.  During my year of being sick and not knowing why, I went through some periods of fairly severe depression.  A psychologist who specializes in chronic illness helped me learn how to cope with the uncertainty and unpredictability of my illness.  Ironically, her grown son has ME/CFS, so she probably recognized what I had before I did.

When I read those first books on ME/CFS and finally got my diagnosis, I was elated.  It was such a relief to know that others have gone through what I was going through, that other people understood my illness, that I wasn't alone.  

My relief was soon replaced by feelings of dread, though, as I realized I had a chronic illness.  When I went through periods of feeling better during the previous year, I could convince myself that my ordeal was over.  Now, however, I was forced to face the truth.

I have a chronic illness.  It probably won't ever go away completely.  Any attempt to disregard these basic facts is self-limiting with ME/CFS.  If I ignore my illness and try to revert to my "old" way of life, the exertion causes a crash and I'm back on the couch.

I wonder when I'll stop thinking of my life in terms of "before ME/CFS" and "after ME/CFS."  When will I truly accept that this illness is an integral part of who I am now?   I'm learning that acceptance is a process.

I do know that I don't want to be defined by this disease.  I've come to realize that I'm still me.  I can still be the same person I've always been, just living a different lifestyle and accepting my new limitations.

This process of acceptance is especially hard in my role as a mother.  I can no longer play soccer with my boys in the yard.  I'm devastated to think I may never again be able to take them to Disney World or go backpacking with them, as my husband and I had always planned.  My 6-year old son is frustrated by my need for a daily nap (he gave up his about the same time I started to need one!).

These limitations can make me feel inadequate as a parent.  Fortunately, I'm an optimist at heart, and these dark thoughts grow less powerful as I learn to accept my new life.  In fact, it's my children themselves who often remind me of all that is still good in my life.

Meanwhile, research into the cause and treatment for ME/CFS continues, although at a slow pace compared to better-known illnesses.  Laura Hillenbrand, best-selling author of Seabiscuit, brought some much-needed public attention to ME/CFS, when she described her own battle with this disease in interviews and essays.

So, I nap and rest and continue to monitor my symptoms and level of activity.  I'm happy with my life most of the time, although of course I'd prefer to be healthy. 

Living with ME/CFS has even taught me a few lessons.  In being forced to slow down and rest, I now take better care of myself than I used to.  I'm physically unable to fly through my days at the fast pace to which I was accustomed.  The result is more quiet time spent with my sons, where previously I was always trying to get things done.

Accepting this illness and its limitations has been a long, hard road.  I still sometimes get frustrated that I can't accomplish more, but getting a diagnosis and learning about ME/CFS has allowed me to understand my limitations.  Living within those limits has greatly reduced the number and severity of relapses.  I'm also grateful that I'm not more severely debilitated; many people with ME/CFS - like author Laura Hillenbrand - are bed-ridden much of the time.
I continue to search for effective treatments and wait for more research, but I'm no longer waiting for my "old life" to resume.  I'm writing, spending time with my friends and family, and enjoying my children. This isn't exactly the life I envisioned for myself, but it's still my life, and I plan to enjoy it.

©Suzan L. Jackson, 2007