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.

Tuesday, May 15, 2012

The mystery of why can't the bookworm read?

The boys loved putting on the "bobbies" hats when we had our own little mystery: who had robbed our flat while we were all sightseeing?

Good golly, great balls of fire!  I am NOT kidding when I say that I'm not sure how much longer I can "accept" this new Irene who doesn't read, who's not capable of reading because of problems with concentration.  I'm very much back in the POSITION of being able to read again, given that my daughter's health is, for the most part, on the upswing, and that I'm back in bed.  In fact, given how much I am recovering from the abuses my body and CFIDS/ME/fibro-addled brain experienced in the last two years, that is, between all the health crises in the family, I should be able to GLADLY escape to my book world, and certainly would have any other time in my life.  Heck, normally at any other moment in my life, I'm sure a crazy blood-thirsty gang of Viking would have had problems ripping a book away from me.  

This is a totally new me I don't recognize.  I don't like it at all and, frankly, I'm beginning to fear it.  Heavens, no matter how ill I've ever been, I've always been able to read.  Granted, I did get to the point in my deteriorating health where I was strict with myself and forced myself to read at all times, for fear of losing the ability to do so. And I reluctantly admit to reading some of the most awful junk on my really bad days (no titles from me on this count - I still have a bit of pride left!) when I had such extreme concentration problems.  Yes siree, I've read awful, flinching stuff when all is said and done, all in the name of keeping my brain from completely atrophying from this DD.

Forget the memory problems (pun: groan!).  I signed the terms to the surrender of that battle a long time ago and made extremely difficult concessions to the agreement, that of having to read a book in a day or in a single "sitting."

"Sitting"?  And how wrong is THAT word since I can basically only read lying down and only on my right side at that, in bed, no other way as long as I can remember?  Ha!  Given that I remember HOW much (?), I'm not sure how convincing that statement is.  But rest assured, it was my middle child, who's always had a knack for noticing the oddest things, who pointed it out to me back when he was about eight years old and he was absolutely right.  And I DO remember my mom being upset with me even when I was growing up, that I wasn't able to read from a sitting position.  I'm a bit of an odd duck, aren't I?

There's yet another reason that I'm afraid and upset about this inability to read.  Just as I've always used my "Russian-ness" as an identity that made me different from others as I was growing up and allowed me, I strongly feel, to avoid an "identity crisis" in college when EVERYONE was going through their "identity crises,"  (it WAS the 70's!) so, too, has "bookworm" been an integral part of my identity.

I've lost so much to this stinking disease, this CFIDS/ME and fibromyalgia, not to mention the migraines, the pain, the God-awful fatigue that makes you want to flow down the drain with the water as the bathtub empties.  I'm no longer able to garden like I love to, cook and bake like I yearn to, on a regular basis.  The couple of times I can do so a year, if I'm lucky, are an exception to the rule.  I long ago gave up on photography (or picture-taking!), swimming, visiting with friends.  I've not been to the movies since 1997 when "Titanic" swept the Oscar's, this a person as a member of a family that would often go to see three movies right in a row on a single Saturday or Sunday.  I no longer go to church. I cannot clean, iron...tasks I used to love to do because of the sense of accomplishment I always felt afterwards, if for nothing else.

As I torture myself trying to analyze what the heck is happening to me, I realize that in the last twenty years I've become more and more drawn to mysteries, and series at that, and have wondered why?  It took me a while to realize that the mystery aspect was enticing and appealing because it sharpened my deductive reasoning skills - a fancy way to say that I needed to think like a detective as I've tried to figure out my biggest mystery: what the heck was going on with, to and in my body, as well as my brain?

And why in the world the love of series?  Well, because it was so much easier to read a novel where I knew all the players and their histories and didn't have to kill off precious brain cells in trying to learn new people and places and their back stories.  There's not much I dislike more than beginning a book because it's just so hard to figure out what the heck is going on.  Lordy, even the font that changes from book to book throws me off my game.  All of this is so weird since that means that as I was reading 400 plus books a year in the last few years  (I kept a journal of titles, that's how I know!) that's an awful lot of unpleasant feelings at least once every single day. Was/am I a masochist? Coupled with how much time I would spend each day wandering the house trying to find a book to read, was in the "mood" to read (code word alert!), and given how much I was reading, I marvel at how quickly I must have been flying through those books!  And it's no wonder hubby had such mixed feelings about hitting up our libraries, hauling books home by the bagfuls, hoping he'd hit a home run with at least a couple of those books every few days.

A funny memory of my kids' childhoods.  At night when they would finally be ready for bed, once I got to the point where I couldn't always put them to bed anymore but hubby had to as often as not, the kids would run to my bed, attack and jump all over me vying for my attention, hyped up as usual from just being three rambunctious children, and demand to know what I was reading and how far along I was into the book. In the morning, when they would see that I'd had yet another sleepless night, they'd again invade my bed and want to know what I was NOW reading. Their biggest delight: if I had finished the book I was reading when they went to sleep, read another book as they slept and was into book #3 when they woke up.  OK, I never said my kids were NORMAL!

I'm trying every mind game I can think of and I still can't get into reading, this to a person who would walk down stairs reading, wash my hands in the sink while reading, brush my teeth while reading...the list goes on and on. In fact, I often tricked myself into doing a chore my body couldn't handle by reading and doing that chore at the same time.  I'm not saying I remembered anything I read while doing these things.  It was a bit like a roller coaster ride, fun while doing it but almost immediately forgotten.  And it got the job done.

Just as a smell can trigger the most deep-seeded memory and bring it it the foreground, I remember where I was or what my interests in life were back then, and I recall what crisis, happiness, indeed every twist and turn of our family's history at any given moment, all from just seeing a book cover.  Books are my history.

And the joke and anecdotes surrounding my reading are many. We were on our first trip to London, the entire family! The oldest was ten (trip first described in the post on 2/26).  We stopped at the bookstore at the airport (oh how I love to look at walls and tables at a bookstore and laugh when I see that I've read at least 75% of the books I see).  The gentleman remarked on how wonderful it was to see my kids zeroing in with excitement towards the books instead of the toys sold there too.

Before you get to "Oh, how sick can she be if she's flying to London, for heaven's sake!"  Wait!  

I held up a book that had caught my interest, but feeling very guilty about the bloody fortune we were spending on this vacation, plus so exhausted from the packing and planning, I was definitely not in peak shape even for my low standards.  I help up a book and asked the seller, "does this come in paperback?"  The man looked at hubby and hubby looked at clerk and I had no answer to my seemingly simple question.  I repeated, holding the book up even higher, a bit annoyed since my upper body strength has never been the greatest, I was exhausted, I was sure my makeup was rolling to my neck down from my face, I was sweating, I was becoming nauseated, my hair was getting wet from the exhaustion and all I wanted was an answer to a very easy question.  Griding my teeth behind what I'm sure was a very fake smile, I repeated, "DOES THIS BOOK COME IN PAPERBACK," a bit more slowly than called for.

The looks going back and forth were quickly getting on my nerves when hubby gingerly replied, "Uh, Irene...you ARE holding the book in paperback."

My brains was so slow that it took me a full minute of staring at the darn thing to finally understand what he meant.

Some days you just can't win.

In the meanwhile, I'll continue reading samples of books from my Kindle.  Something has to finally kick in. 

Reading, like I said, is me.

Visiting Kensington Palace on  Easter Monday, we discovered that Princess Diana had set up an  Easter Egg hunt for little children coming through that day, as well as a place in the basement where they could color and make all sorts of Easter arts and crafts projects.  What a lady!  

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  1. I found your blog via A Model Recommends on YouTube. I can feel your pain - literally and figuratively. I was diagnosed with Fibromyalgia in 2005, a year and a half after the symptoms began.

    I dearly miss reading books and gardening. I can't concentrate long enough to get through a book (let alone a magazine article) and gardening is physically exhausting. I'm also prone to skin allergies, as I discovered the last time I attempted to weed.

    I saw a new specialist earlier this month; he put me on a new anti-seizure med to control my migraines. I take another anti-seizure drug to control my Fibro and nerve damage pain. Anyway, the new med does NOT agree with my system and I have to call the doctor to let him know. I am hopeful that he will administer Botox injections when I see him in June.

    I look forward to your future blog posts and hope you have more good days than bad days. Of course, 'good' is relative with Fibro but, something for which to be thankful.


  2. Hi Labyorkie! Thanks so much for stopping by and reading and I REALLY do hope you become a part of this blog. (sign up?)

    It always, always saddens me to hear about yet another person in pain, robbed of the pleasures they'd enjoyed in life. And from your comment I can see that you really do understand the boat I'm in...I see you jumping in there with me! ;) I'm so sorry to hear that you, too, have been deprived of so many things that gave you pleasure, feeling of worth, a sense of adventure. Annoying, frustrating, and maddening, isn't it?

    I've addressed some of the concerns (ha! be real, Irene!) PROBLEMS you're going through. The posts dealing with skin problems may help you...at the very least in knowing you're not alone. And I really hope that my blog site becomes a safe haven, so to speak, where you always know that you can "hang out" for a bit and be accepted....

    Yep. Know the anti-seizure meds scenerio. Luckily for me, the two I'm taking have been helping me a great deal - not magic, but added to dealing with symptoms a bit more easily. At times I've tried to cut back on them for numerous reasons, mostly, perhaps, because they tend to make me gain a bit of weight, but always mess up my system in doing do, and go back to them.

    As I said in an earlier post. We are "patients" and doctors have "practices." Because everyone is so different, I think that, in and of itself, says that medicine HAS to be an art. ("Medicine Is An Art, Not A Code Number.)

    Good luck, Labyorkie. I look forward to more comments from you. In the meantime, I sent you positive thoughts that you may soon have a bit of a break from all this pain, etc., "nonsense," for a week perhaps, or a bit more. The up's and down's alone can drive one mad, I know!

    Пока, aka, Poka, meaning, "until next time," with a hint of "take care"!

    1. Huge P.S. And who doesn't love Ruth? I'm totally addicted to her.....so much fun and a way to be taken away from our various problems for a bit. Sound sensitivity? With Ruth's lovely voice and calm manner, fibro's can, indeed, handle her and more - enjoy her! Go Ruth!

    2. Labyorkie, you DID sign up! Thanks!

  3. Hi Irene,
    I got here via Ruth's blog. As you might have understood from some of my comments I live in the south of Europe and I love England.
    I wish you strength and that your health problems might, if they don't get completely solved, at least become less acute, specially what reading is concerned. Curiously some of the books mentioned in your profile are also my favorite books.
    All the best. x

    1. Hi Maria,
      From your comments on AMR I knew you loved literature, but to hear that we have some books in common as favorites is indeed special!
      Thank you for your beautiful wishes - they truly mean much to me. And I do hope you'll stop by here as time permits!
      "Meet" you at Ruth's at any rate, I'm sure! ;)
      Irene (aka Ира)
      BTW, where do you live in Europe, if you don't mind me asking!

  4. Dear Irene,
    I live in the Algarve which is located in the south of Portugal. The name applies to a strip of land, in rectangular shape, with an area of 2090 sq miles. If you type - Algarve - in the Google Images you can see some nice pictures.
    It’s THE place where most Portuguese spend their holidays and due to its good weather, nice beaches and peacefulness (the crime rate is very low) there are many British, German, Dutch, Danish, etc. permanent residents, mostly retired people, but also younger couples who started a business here.
    I was born and grew up in Portugal (not in the Algarve, in the capital, Lisbon). After marrying a Dutchman (actually my name is "van der Bent") I moved to Amsterdam where I lived for several years, then I came back to Portugal, went away to Holland again and finally settled in Portugal with my husband and son. As you can see our life has sort of oscillated – I don’t know if this is the right word in English – between the North and the South of Europe.
    As for England, when I went there for the first time, I had a feeling of belonging, as if I’d gone home, which is weird for a foreigner, but that’s what I felt. This happened again on my next visits and if I hadn’t married a Dutchman, I would have done my best to try to get a job there.

    Hope I haven’t bored you too much with all this talk. It’s Thursday evening here, so have a nice Friday. X

    1. Hi Marie!  

      I'm certainly enjoying the geography lessons I'm getting from this blog.  I looked up Algarve on google as you suggested and it is indeed beautiful.  I also enjoyed reading a bit about the history.  Thank you so much for opening this part of the world to me.  I'd been to the south of Spain (meaning that is the closest I've been to Algarve) and to Amsterdam, but your native land is a new world to me, that is the Algarve area, which I'm sure I'll run into often now that you've put it on my radar, so to speak.  I'm also in awe of your linguistic abilities!
      I know exactly how you feel about England - I felt the same the first time I went there and fell in love with it more each time after.  I really miss not having been there in so long.

      No, you have most certainly not bored me at all...it fascinates me to meet people from all over - add in another lover of England, books and beauty?  Well, what an incredible combination! I do so hope to see you here as well as on Ruth's page!  Thanks so much for writing (and reading)!

      Irene xx

  5. Hi Irene,
    I hope the week has started well for you.
    How nice that you were able to see some pictures and to read a bit about the history of the country. If you feel well enough to travel and ever decide to come to these parts, I'll be glad to show you the most interesting places.
    For now, see you at Ruth's. Though I don't always comment, I do read the posts and the comments regularly. x

  6. Hi Maria! I was so happy to see your comment. I meant to say that on my FB page, the large timeline picture is of me in Amsterdam, your "second" home. The cobbkestones made it hard for a wheelchair, both for the person in the wheelchair and the one pushing it. But my husband and I had a wonderful time, Amsterdam, too, filled with so much history. And I loved the almond pastry/cookies and have never been able to find a recipe like the ones I kept eating and gaining weight from! Yum!

    Thank you for your kind offer to show me your country if I ever make it there. You just never know! :) Portugal would indeed be fascinating to visit, especially the Algarve. It has already been added to my bucket list...your kind invitation moves it higher up on that list. I absolutely love to travel when I'm able to, though the price paid after is enormous!

    Thanks so much Maria!
    Irene xx