Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Right after the new babies were born I got sick and was down for several days.  I just barley got out of bed to drink something, take some tylenol, go to the bathroom, and crawl back under the cover.  Even with my bed warmer on high, covered with three flannel sheets and two quilts, and warm weather, I constantly shivered.  My head hurt and my body ached.  My throat was sore and I coughed a lot.  I haven’t been that sick in quite a long time.  I did too much when I was babysitting.

I’ve never explained this before but I have Chronic Fatigue Syndrome/Myalgic Encephalomyelitis or CFS/ME for short.  No one knows what causes this illness or how to cure it but it affects millions of people.  In the 1980s this illness was called “post exercise malaise” or “Yuppie flu” because it showed up mostly in people who had gym memberships and exercised regularly.  Which I did.  Many doctors believed our illness was imaginary because as everyone knows, exercise is supposed to be good for us.

Some medical records mention this illness way back to the 1700s and its had several names.  The first name I heard was the post exercise malaise but then the name was changed to “chronic fatigue syndrome” or CFS.  The disease is now Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.  Its had so many names because the doctors and scientists who understand that it is a real illness can’t agree on a name.  They can’t even agree if its an illness or a disease or a birth defect.

The hardest thing to do is explain about this illness to other people.  About how exercise makes us very sick with the flu.  The more strenuous the activity the worse the flu.  Its hard to explain because everyone has heard how exercise can improve your health.  Exercising is so well known that often a well meaning person will suggest to a CFS/ME suffer that they should probably exercise more but start out slowly so they’ll soon feel better.  I can’t count the number of times I was told by some well meaning nurse practitioner, who had no clue about the illness, that I just needed to get more sleep or to take vitamins or to start exercising to feel better.  AGRrrrr!  Seriously? I guess you would also tell a diabetic to eat more carbs and sugary deserts to feel better.  Or maybe you would tell a peanut allergy person to eat a few peanuts to feel better.  Geeze!  Exercise is the worst thing for a CFS/ME sufferer.  Who in their right mind would deliberately create conditions to make theirself sick?

Since exercise has the opposite effect on a CFS/ME person its no wonder that people without it don’t understand.  The best way I can describe how I feel is to suggest you remember the worst ever case of flu that you can remember and think about how it wore you out just getting out of bed to walk down the hall.   Now imagine having a permanent case of that flu.  That’s what exertion does to me – it wears me out and makes me feel horrible.  Getting the flu after exercise is a tough symptom to wrap your head around even when your’re the one experiencing it.

For me, an episode can be triggered by what seems like very minor physical activity to everyone else.  Simple walking should be good exercise.  Right?  Well, a casual thirty minute walk can put me in bed sick for a couple of days.  I chauffeur my SIL for her once a month grocery shopping day.  Grocery day used to be a dreaded task for me.  Not because of my SIL but because of the illness after a day of walking.  Thank goodness many stores now have rest benches in them.  I’ve learned my limits and plan for lots of rest stops over the day but it still takes three or four days to fully recover from a shopping trip.  My current episode of illness is the result of babysitting the grands when my daughter had her baby.  A one year old and a three year old can be a handful.

I haven’t been this sick for this long in over two years.  Symptoms come and go for me.  I have flare ups and remissions which is another reason its so confusing to understand this illness.  Usually people think of an illness as either controlled or cured so they don’t understand how CFS/ME persons can be up and active one day (or minute) and bedridden sick the next.  A simple way of explaining it is that my immune system is stuck in overdrive and there is no way to power it down.

As I get older the episodes are farther apart but last much longer.  The episodes sure make it difficult to stay on schedule to get work done.  Which is the major reason I refuse to do any deadline quilting work anymore.  I never know when an episode will flare up or how long it will last.  I can’t make promises I may not be able to keep.

Now that my illness is back in remission I’ve completely lost track of my quilting waiting list and my healthy eating.  I had more brain fog with this episode than usual.  I’ll have to refresh my memory a little before going on.  If anyone emailed me to be put on my waiting list but you don’t see your name please email me again.  I’ll get back to the frugal stuff this weekend too.