August 2011 ME Story: Sue

March 21, 2002

I’m so sick of feeling exhausted and achy, so sick of lying on the couch, so sick of getting nothing done.  I want my life back!

When I wrote that entry in my journal, I had been ill for three weeks.  I never imagined as I wrote those words that my “flu” would turn out to be a chronic disease that would change my life.  Accustomed to an active lifestyle, I was frustrated by a few weeks of infirmity and completely unprepared for what came next.

Twelve months passed in a blur of bewildering pain and exhaustion.  I went from doctor to doctor, searching for some explanation for this sudden and debilitating illness.  Some doctors offered theories that would be disproved with time; others simply said, “I have no idea what’s wrong with you.”

Amid months of endless doctor appointments and blood tests, there were days when I felt well again. These good days would alternate with days when I felt horribly sick, in a seemingly random pattern.  I never knew what to expect, and this emotional rollercoaster was devastating.

May 10 –

Still feeling wiped out and achy.  More blood tests today.  I feel unable to cope.

May 13-

Wow!  It’s me – I’m back (or on my way back anyway)!  I had some real energy today!!  I’m not completely back to normal, but I feel like ME again.

June 1 –

Woke up feeling tired after 9 hours of sleep – déjà vu.  I took 2 long naps today and still feel rotten.  Terrible sore throat – just like before.  Pretty scary.

Each time I had a couple of good days in a row, I thought I was finally getting better.  Elated to feel like myself again, I’d revert to my old activity level, trying to make up for all that I missed during my sick days.  Inevitably, my symptoms would worsen again, plunging me back into despair.

I was unable to come to terms with this mystery illness.  My life was in limbo as I struggled to do what I’d always done in the midst of unpredictable ups and downs.  It never occurred to me to try to accept my illness because I believed I would get well once I was properly diagnosed.

During my worst relapse, I was forced to face reality.  This illness wasn’t going away, and I couldn’t continue to live my life in the way I always had.

March 2, 2003

A whole year of my life.  Maybe it’s appropriate that I’m feeling so horrible – a reminder that it’s not over.  I just want to give in to whatever this is.  I’m so tired of trying to keep going when I don’t feel well.  I feel like just giving up and being sick, staying in bed.  It takes too much energy to live my life and I have no energy left.

Finally, more than a year after my illness began, I found a new family doctor who recognized the pattern of my symptoms as an immune system disorder known in the US as Chronic Fatigue Syndrome (CFS) and in much of the rest of the world as Myalgic Encephalomyelitis (ME).  One of the primary characteristics of CFS is an intolerance to exercise, where even mild exertion results in a “crash,” a sudden worsening of all symptoms that feels like you’ve got the flu and can last days or weeks.  That explained those mysterious ups and downs I was experiencing.

I was elated to have a name for my illness and to learn that my new doctor was one of very few who was knowledgeable about treatment options.   My delight soon turned to despair, though, as I realized I now officially had a “chronic illness” with no known cure. I was stunned by the thought that I would have to live with this for the rest of my life.

June 4, 2003

When will I stop thinking of my pre-illness life as “normal”?  I guess that would be the sign of true acceptance.  But I’m not sure I want to be that accepting!  I don’t want to forget “the old me” (what I still think of as the real me).

It’s a constant internal struggle.  If I truly accept this illness as part of me, does that mean I give up all hope of recovery?  Yet, if I refuse to accept my new limitations, then I am sentencing myself to continue relapsing.

With the help of my doctor, I began to see mild improvements in some of my symptoms, but my emotional struggle continued.  My optimistic nature was battling with the reality of my situation.  I knew that I needed to accept this illness as a part of my life and make major changes in my lifestyle, but I didn’t want to give up my old life.

October 21, 2003

I feel trapped by my body.  My mind is running in high gear – I have mental energy, motivation, so many things I want to do – but my body won’t allow it.

A year later, the unthinkable happened.  My older son, Jamie, who was then 10 years old, began to show symptoms that were eerily identical to my own.  It was horrifying to see our once active and energetic son so debilitated.

October 3, 2004

I’m so scared for Jamie.  I can no longer deny the parallels between my own illness and his.  The pattern’s becoming more and more clear.  Today he had a definite CFS-like crash three hours after playing soccer, after feeling great in the morning.  And for the first time, he also said his throat “felt funny, sore but not like strep throat.”  I can’t stand to think of him going through this.

Jamie missed 60 days of 5^th grade that year.  We took him to see Dr. David Bell, a renowned pediatric CFS expert, who confirmed what we already knew – Jamie also had CFS.

About the same time, our younger son, Craig, just 6 years old and starting 1^st grade, began to show strange symptoms.  Always a happy, exuberant child, Craig was suddenly complaining of back pain, headaches, chest pain, and “feeling bad all over.”  As his symptoms intensified, we began to wonder – with shock and terror – if Craig could possibly be developing CFS, too.  It seemed unimaginable but became harder to deny as time went on.  One Christmas Day, both boys crashed badly after a football game with extended family.

December 25, 2004

Christmas Day.  I want to be filled with joy but instead I feel fear – deep, scary fear.  Jamie had a bad crash after playing football.  His face turned beet red, he felt nauseous and sick.  It was a stark reminder of what we’re dealing with.

…But most terrifying of all is that Craig isn’t feeling well either.  No one wants to say so, but he had his own crash after the football game.  Everyone keeps saying, “he’s overtired” or “he’s hungry” or “maybe he’s catching a bug.”  I desperately want to believe it’s one of those wonderfully ordinary problems, but his pasty complexion and “I just feel bad all over” description frighten me to my core.

We conferred with Dr. Bell, who agreed it was likely he had CFS but suggested we wait and see since his symptoms were still intermittent.  Finally, after Craig missed 35 days of school in 3^rd grade and the principal called to find out what was going on, we realized it was time to have him officially diagnosed.  There were now three of us in the family with CFS.

Those were dark days for our family.  The three of us were often completely debilitated at the same time, lying in various spots around our family room, unable to do anything except read and watch TV.  My husband, the only healthy one in the house, was under tremendous pressure, working full-time, taking care of the three of us, and also trying to do all of the things I normally did around the house.  We hadn’t really had time to even accept my own infirmity before facing the debilitation of our kids as well.  All of us struggled with depression.

January 4, 2005

Having a lot of trouble with that “one day at a time” stuff today.  I feel so desperately alone, in need of help but not knowing where to turn.

…I just want to escape all of this, but I can’t escape my own body.  I know that I’m wallowing in self-pity tonight, but I don’t know how to dig myself out of this pit of despair.

I found help through various sources.  I started seeing a psychologist who specializes in chronic illness.  Her own grown son has CFS and had to move back in with her for a while, so she understood what I was going through, both as an ill person and as a parent.  It also helped to discover I wasn’t alone.  After a year without a diagnosis, I was thirsty for information.  I read books, searched the internet, joined online information lists, and began to interact with other people with CFS online.  Eventually, I started my own CFS blog and, later, a local support group for parents of kids with CFS.  I benefited greatly both from the support of others like myself and from being able to help other people.

As I learned more and became more comfortable with the idea of living with a chronic illness and still finding joy in my life, I was able to begin helping our kids.

October 31, 2005

I need to help Jamie learn how to live peacefully with the uncertainty of CFS’s ups and downs.  He’s still in the stage where a crash surprises him and makes him feel angry and depressed.  I want to help him learn to expect the crashes and to feel pleasantly surprised if you manage to avert one.  Learning to ride through the ups and downs is the greatest challenge of this illness.  I want to help him understand that he has choices, that he’s not a helpless victim.  Sometimes we choose to do something, knowing we’ll likely crash but deciding the risk is worth the joy to be gained.

Fortunately, our boys improved with treatment for Orthostatic Intolerance (OI), a condition of low blood volume and difficulty maintaining normal blood pressure and pulse rate that results from CFS.  As with many kids, OI medication had a dramatic effect on our boys, allowing them both to return to school full-time.  They both sometimes experience a severe crash and miss a week or more of school, but they’re able to live almost-normal lives the rest of the time, albeit with lots of medication, very early bedtimes, and being careful not to overdo.  A sleep-over or a soccer game can result in days spent on the couch.  They each miss about 20-25 days of school a year now, which we consider quite good.

All of us have come a long way in accepting our illnesses, but I now realize that it’s an on-going journey defined by both progress and setbacks. I try to maintain a careful balance between acceptance and optimism.  Both are necessary for healing.  Our family tries to be grateful for all that we have and to appreciate the joys in our lives.

Understanding my physical limitations helps me to even out some of the ups and downs that defined my first year of illness.  I hate approaching life so cautiously, but I now recognize that this helps me to avoid relapsing. What’s harder to accept is that I can’t always control my symptoms; despite my best efforts, I still experience the crashes that define this disease, often with no obvious trigger.

I still sometimes yearn for my old life, but those episodes are less common now.  More often, I am sustained by a sense of hopefulness.  I continue to try new treatments and believe that research will someday yield a cure, but I’m no longer waiting for my life to return to normal.

We’ve found a new normal, and we are living our lives again.  I’ve learned that I’m still me.  I can accept this illness as a part of my life without letting it define me.  I can still be a mom, a wife, a friend, a writer.  My life now is different than my “old” life, but it’s mine.

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Posted by Dominique with permission of the author.

Suzan Jackson is a freelance writer who lives with her husband and two sons in Delaware.  She writes a blog called Learning to Live with CFS at and two book blogs: Great Books for Kids and Teens at www.greatbooksforkidsandteens.com and Book By Book at www.bookbybook.blogspot.com.  You can read more of her writing at www.suzanjackson.com.

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