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I cannot put my finger on the day/month/year that I came down with CFS. 

My name is Claire.  I cannot put my finger on the day/month/year that I came down with CFS. 

 

I do know that I received antibiotic treatment as a baby for ear infections, and as a five-year old I received a vaccination when I moved into a just painted naval Quonset hut after having stayed with an abusive family for several weeks while my father was in the hospital.  I began experiencing IBS symptoms the next year, and then when I was eight I began having bouts of pharyngitis and flu-like symptoms. 

 

For five years in my teens I was put on various antibiotics for acne, and I dropped that treatment when I learned that antibiotics could cause stomach upset.  The military doctors that I had been seeing had diagnosed me with a "nervous" stomach--totally ignoring the antibiotics I was on.  Throughout this time my energy would go up and down.  At 18 I went to an allergist and learned that I had a boat load of allergies; we--my family and I--attributed my bouts of flagging energy to the allergies.

By my early to mid 20s I got tired of doctors who had no answers as to why I kept getting the flu-like symptoms and also looked at me as if they wished I would just go away, and so I did--I quit going to doctors for about 8 years.

 

When I left home at 20 my general health improved -- that is, I had fewer episodes of flu-like symptoms.  At 22, I was hit with an intense bout of fibromyalgia (of course there was no name for it back then and I waited the symptoms out, never seeing a doctor).  I think I had had fibro symptoms before, but at 21 a car I was traveling in hit a tree at 65 mph and I think that was that.

 

By my early to mid 20s I got tired of doctors who had no answers as to why I kept getting the flu-like symptoms and also looked at me as if they wished I would just go away, and so I did--I quit going to doctors for about 8 years.  By that time, I knew I had weird reactions to perfumes and household chemicals.  I couldn't tolerate air fresheners.  I was also experiencing odd symptoms all the time.  My hands had not stopped hurting since the bad bout of fibro at 22; I'd had problematic low blood pressure since my teens, continual headaches since childhood, bouts of dizziness, non-stop ringing in my ears starting at 22, etc. 

 

I finally figured out that I was extremely sensitive to cigarette smoke (my health improved when I left home because I was no longer living with smokers), cats, and paint fumes, and also that each of these could trigger the exact same flu-like episodes and pharyngitis.  I came to see these episodes as full-body immune responses, but my doctors simply looked at me.

Seriously, denial had become my best friend (how else does one live with non-stop pain, continual headaches, ringing in the ears, and a host of other strange symptoms)..

For a number of years, I managed to avoid cats, paint, and cigarette smoke (quite a feat in the age before it was banned in most work places), and I found that I never had a sick day off from work.  I felt bad all the time, but I did not experience the flu-like symptoms.  Then, in my early 30's I had an accidental exposure to paint and was sick for three weeks.  The allergist I consulted was "intrigued" by the oatmeal like matter that I would cough up from my lungs when exposed to paint, but his interest resulted in not so much as a "stay away from chemicals" because of his fear that he not plant the idea in my head that I might have chemical sensitivities.  Around this time, I noticed that the bouts of flagging energy I'd been having was increasing--that is, I was having more of them. 

 

Then at 34, I had another accidental paint exposure and this time I was sick for five weeks and the fatigue was extreme; I did not recover.  I stayed seriously fatigued for two years.  Of course, I chose to go ahead to law school as planned.  Seriously, denial had become my best friend (how else does one live with non-stop pain, continual headaches, ringing in the ears, and a host of other strange symptoms), and I thought that the level of fatigue I was feeling was going to be life-long (after all I had watched the fatigue increase over the years). 

 

Then, at the beginning of my second year of law school, I began experiencing explosive diarrhea after allowing my apartment to be sprayed for roaches several times in a couple of months.  (Because I have minimal reactions to most other chemicals--other than Lysol, ammonia, moth balls, air fresheners, bleach, paint, polyurethane--, I thought I could handle pesticides.)  This ongoing dis-ease led to some surgery and a terrible IBS diet, which I had to boot along with the doctor who suggested it (the same doctor who looked at me like I was crazy when I said that I thought the pesticides had caused the problem). 

 

So I researched all I could about nutrition and supplements, cut out sugar...  went on a very low carb diet, gave up dairy and red meat, ate 75% raw foods, and took handfuls of supplements several times a day.  After about six months, the diarrhea stopped and one bright and glorious day my energy returned.

I did the allergy diet and discovered that my body was rejecting--of all things--foods that were not low in carbohydrates.  So I researched all I could about nutrition and supplements, cut out sugar, made my own bread and mayonnaise, went on a very low carb diet, gave up dairy and red meat, ate 75% raw foods, and took handfuls of supplements several times a day.  After about six months, the diarrhea stopped and one bright and glorious day my energy returned.  (One way the body can rid itself of pesticides is through rapid weight loss; it seemed my body knew this and rejected carbohydrates.  A very low carbo diet will result in rapid weight loss, but don't try this at home without a doctor's supervision because it can kill you.  I did this on my own because I could not find a sympathetic doctor and I was willing to risk death to find health.)

 

And then at 39 (after being run over by a car as a pedestrian, my dog dying, leaving my husband, moving, my brother being diagnosed with AIDS, and my being laid off), my health began to deteriorate again, and--duh!--I thought that the diet and nutritional supplements weren't working.  Actually, I noticed a severe dip in my energy when I started working full-time again after taking a year off after law school (and the car accident).  (Funny, as physically exhausting and difficult as law school is, I found it less stressful than WORK even though I put in more hours in school.) 

 

And then.. (after being run over by a car.. my dog dying, leaving my husband, moving, my brother being diagnosed with AIDS, and my being laid off), my health began to deteriorate again

...and so I gave up the diet and the supplements (I thought it was just something else that worked for a while and then failed...like antihistamines).  And my energy went up and down and up and down.

 

By this point in my life I had never had a cold, and as an adult, never had a virus other than the stomach flu three times, and then at 39, I had my first non-stomach-flu virus as an adult.  At 44, I think I may have gotten mono, and my doctor did not test me for it because I had an anaphylatic angioedema allergic reaction to a cough medicine at the time I went to see him with what I now believe were the initial viral symptoms, and this reaction caused my neck/glands to really swell up.  (I am allergic or sensitive to many drugs; this particular drug--a cough suppressant--is recommended by some to stop reactions to petro-chemicals and paints right in their tracks...and I'm allergic to IT...sigh)  And the fatigue I felt after those initial viral symptoms felt just like more of the same only worse. 

 

When the (mono?) fatigue finally left (that is, when it finally lessened) after 4 1/2 months (I worked the whole time, although I would cry when no one was around because I was so fatigued), I realized that I had to stop pushing myself.  I had to save all of my energy for employment (for that all important paycheck), and so I gave up all volunteer work.  By now, I'd become incredibly good at "faking it."  As far as I was concerned I was going to fake myself into an early grave, and an early grave was preferrable to figuring out how I was going to support myself without an income.  (Or live a dull and unfulfilling life.)

 

Within two years of that probable bout of mono I was going down and not coming back up.  I asked my employer to let me work from home, and finally months later when I asked to work 3/4 time from home for 3/4 pay, my employer let me work full time at home.  But it was too late.  That winter I had the second non-mono virus as an adult.  And by spring I was in full denial mode.  I had a mortgage, law school loans, and I couldn't see how I would survive without a paycheck. 

 

Also, up until this time, my biggest fear had been that my chemical sensitivities would cause me to have to work from home and that I would be unable to find suitable employment, and here I was with a decent paying job working from home and I was unable to do my work.  My migraines had taken over my life, my fibromylagia was coming on with a vengence, I lacked energy, and worse yet, I lacked the brain power, and it scared me to death.  And so I faked it even more.  (Lucky for me I was--note the was--pretty bright and so for a long time, I put the hard stuff off until moments when my brain wasn't fogged and skated by on residual intelligence for everything else; my ex-husband used to say that my 40% was like others 110%.  I don't take credit for my past smarts; it was one way in which I was blessed in life.)

 

Not long after I turned 48--just two years after I started working from home--, I mentioned to a co-worker that I thought I had mono again.  This was at the beginning of a five-day, 67 work week, where I was on my feet most of the time managing a conference (although I was working from home, I was still responsible for four week-long conferences each year).  I proceeded to have these viral symptoms on and off for six weeks when my partner begged me to see my doctor.  (By the end of the six weeks I was lying across my keyboard with only enough energy to answer my email.) Although my doctor was skeptical--"most people do not have mono more than once"--, he tested me and found that I had a new mono virus. 

 

And so, I finally allowed myself to crash, and I have been disabled ever since.  I never thought then that I would still be so sick now.

And so, I finally allowed myself to crash, and I have been disabled ever since.  I never thought then that I would still be so sick now.  (I was confident I'd recover in a couple of months--such denial!)  I never thought that I'd continue to lack brain power.  Although it should have been obvious to me that I have been on a downward spiral all these years (that even my ups had become less up over time)--obvious to me had I not had a long-term affair with denial--, I had always managed to work, to support myself.

 

Luckily for me, my mother (though she doesn't have much) had a small home in my town that she bought as an investment, and she gave that home to me (the rent from that home wouldn't pay my mortgage, but it allowed me to sell my home and get out from under all of my debt).  Thank God for my mother's intervention, as I had planned suicide at the prospect of losing my home and being forced to move into sub-standard housing with my partner in order to live.  After years of trying to control my environment and finally being able to do so by owning my own home, I was facing having to rent.  And I couldn't face having to stand up to landlords who wanted to use pesticides or buildings that required painting.  I couldn't be as sick as I was/am and have to fight for my right to live at the same time.  (I would have never gone to my mother and asked for help, as I knew my mother intended that home to bring income to my disabled brother after she died.  My brother has since died and so my need did not rob him of his financial future.)

 

Finally, after years of denial, I accept the fact that I have an illness that is made worse by stress..

Finally, after years of denial, I accept the fact that I have an illness that is made worse by stress, and I think that diet and supplements do help.  As I look to the future, I look forward to learning how to enjoy life more and stress less.  And if I recover a semblance of normal energy, it seems clear to me that full-time work combined with the errands required for every day life is more than my body can take. 

 

I've dreamed about lots of jobs I'd like to have--lots of ways I could contribute in life.  As if it meant something, I used to say, "If I didn't have chemical sensitivities, then I could do thus and so."  Then, one day, I realized that I could NOT do thus and so because there was no Claire without chemical sensitivities: she did not exist.  It's taken my years to substituted CFS for chemical sensitivities in that sentence. 

 

"Life is good. Regardless of the vagaries of living, life is worth living if only to have the opportunity to smell the sweet lemon-vanilla scent of magnolia blossoms, to see one paper-thin periwinkle butterfly flutter about, to feel one cool breeze dance across your skin on a warm summer day, to hear one chickadee call out for a mate, or to taste the juicy sweet nectar of one ripe peach. Joy--the possibility of joy--is abundant even in times of sorrow if only we use our senses. Love life back." -- Claire

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