About Me

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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Thursday, December 6, 2012

Reading Comprehension: CFS & Fibro 101

And preggers with child #2

Finally!  Reading seems to be making it's way back into my life: yippee!  

Books have been an essential part of me as long as I can remember, probably since I first learned the alphabet at the age of four.  Since that time, rarely has a book been out of my hands.  I walk down the stairs successfully while reading a book; I wash my hands while reading a book; I often cooked and baked while reading a book.  

So it was with great anguish that I stopped reading two and a half years ago.  It happened because my daughter became so deathly ill and we spent over a year running to and from hospitals.  For the first time in my life as far as I could remember, I couldn't concentrate on reading.  My great escape was no longer available to me.  My greatest entertainment was no longer available to me.  My greatest identifier, that of "bookworm," was no longer applicable.  I think that during that time once my daughter first became ill, until just recently, I managed to read five books total, this from a person who read over 400 books a year.  (I know, I know: it sounds crazy but I kept a list for ten years so I know my numbers are correct.  OK ... that sounds even nuttier: keeping track of so many books!)

Even during the worst days, months and years of my adventures with CFIDS/ME/CFS, fibromyalgia, migraines, body migraines, myofascial pain, insomnia, and a host of other conditions, I would read, even forcing myself to read if need be.  I learned to read through all but the worst migraines - the one that would make hospital admissions necessary.   In fact, I forced myself to read even on days when I couldn't concentrate on anything of significance.   

So, why did I make myself read?  There are several reasons:

  • The "use it or lose it" rule: afraid that I'd start skipping days, I was afraid that I'd lose my ability to read at all.  And it would be so easy to do so, though it's strange to explain that concept to anyone not ill with something that would make reading comprehension a problem.
  • I'd already lost so many things that I loved dearly - gardening, swimming, cooking and baking.  I was a terribly domestic creature who even loved to clean house.  All of this robbed me of my identities, but I was not about to let reading be taken away, the biggest part of me - that is, after being a wife, mother and best friend.
  • It's the cheapest and easiest way to travel, be it through time or space.  And I do love to travel!

So, imagine my relief when I managed to read three books in the last month.  OK: I admit it.  I'm a book and reading snob and before my daughter became so ill, I would have laughed if someone called themselves a reader and only read a few books a month.  (We all have our moral frailties and this is definitely mine! However, I do realize it and have worked hard on trying to improve my character: unfortunately, it's sort of like trying to teach an old dog new tricks, even when I was ten years old!  Some things are just ingrained in us and no matter how much we try to change, we fail.  JOKING!  I think!)  But back to the subject at hand.

So, what have I been reading?  Nothing earth-shattering, that's for certain.  I'm not up to rereading any Tolstoy or Dostoevsky yet.  However, I have come up with a few strategies to getting myself into reading which may help those who have come down with the DD and are too ill to read books that they would have read in the past.  The following are some suggestions for those who desperately want to get into reading again: hopefully, they'll be of some use to readers:

  • Good days: read what good books you can.  Bad days: read ANYTHING you can, no matter how "low" you have to go! 
  • Reread books you've read before.  By now you may well have forgotten them.  Or in rereading them, you may see many things you never saw before, or see things in a different light as you learn more about yourself and the world because of illness.
  • Reading biographies where one already knows "the plot" is often a safe bet.  For example, anything on the Royal Family is easy-peasy for me because I'm an unabashed Anglophile, especially when it comes to the Windsors.  Biographies are also successful with me because I'm usually attracted to people I know something about.  My big failure was an attempt at a biography of Albert Einstein (his thought experiments sounded fascinating but the real deal got a bit too heavy for me) and I'm now onto Marilyn Monroe, whom I knew very little about.  It's been "fun" to try to keep track of the characters in Monroe's life: impossible, actually.  I've had success only with Joe DiMaggio, Monroe's second husband, because hubs is such a Yankees fanatic and I remember my brother trading baseball cards as a child.  I also remember Arthur Miller, Monroe's third husband because ... well, because Arthur Miller is Arthur Miller, one of the greatest playwrights of the 20th century!  After that, all the people in Monroe's life become rather murky. (I've not gotten to the Kennedy years yet.) 
  • Book series are a good bet.  I like to read mystery series which I've been following for years because the main characters are as familiar to me as members of my own family and so I'm a few steps ahead when I start the books.  BTW: I normally dislike starting new books because in the beginning I'm terribly confused, something that started happening to me more and more, the sicker I became with the DD. 
  • LONG books are terrific, and the longer the better.  Why?   In my case, I don't have to change gears and can read to my heart's content, not sighing in sadness that the book will end too soon and I'll have to go start another book.
  • Find books with settings that are on your radar because of some sort of special interest.  I find myself reading books which put me into my children's worlds.  One son lives in Malaysia, so I've read a few books on that country.  Likewise, when he lived in Australia for several years, I read just about every book from Australia I could get my hands on.  My daughter teaches autistic children, so I've gotten into Temple Grandin as well as books that deal with the subject of autism.   
I've often wondered what the attraction to mysteries is, especially given that "book snobbery" problem of mine.  After all, back in my university days, I thought nothing would be better than when I finally finished my education and would be able to read as many of the classics, especially modern classics, I could possibly want. In fact, I've read very few "classics" over the years.  And mysteries?  Why, pray tell, mysteries?

I finally figured it out a few years ago.  (I know I'm slow, but I didn't realize that I was THAT slow!)  

It's because my life is a mystery.  Just as psychiatrists usually go into psychiatry because they want to understand themselves better, I read mysteries because I want to hone my detective skills.  I want to know why it is that I'm sick and how this happened.  I want to be able to think outside the box because I think that too many of those trying to figure out the mysteries of CFIDS/etc. and fibromyalgia haven't done a great job of it.  

They say that the best physicists are the young ones.  "Why is that?" I asked my hubby once.  I discovered - or it's my interpretation - that it's because the young ones are those who can still think outside the box.  The young ones aren't afraid to go where no one's gone before.  Once they learn too much about the laws of physics, that is, as the young physicists get older, they start to assume too many things.  Harry Feynmann of the "Manhattan Project" was the youngest physicist at Los Alamos.  Because he was too young to be impressed by such accomplished scientists as Niels Bohr, he was often sought out and given great weight: he wasn't impressed by the older guys, he just wanted to do physics, period. 

In mysteries, it's unsafe to assume anything.  So, I suppose that I'll always be a person interested most in biographies of people who've done great things in medicine (see the posts on Dr. Janet Travell and her pioneering work on myofascial pain) as well as being interested in mysteries.  Because my life is one great mystery which needs to be adjusted at every twist and turn - which is often hour to hour - it's a simple matter of survival in many ways as well.

Books, especially mysteries, are the best way I know to keep my brain from atrophying, as well as keeping myself in the loop of what mysterious things my body and brain have been up to at any given time.

What do you think: am I on the right track?

As always: I hope everyone is feeling their best, only better.  Ciao and paka.

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  1. Fab post Irene, I used to be a book worm too! (still am!) 400 books a year! That's amazing! Surely that is a world record?!

    1. Thanks, Chloe! Go bookworms! Proud of it. It doesn't surprise me that you are one too. Look at how much that's helped you, a 15 year old, to have her own blog! xx