Good Summer Reads

The new summer's light entertainment has finally kicked in and I, for one, am thrilled. Add a bit of very light summer reading and I'm pretty good to go.  I've been holed up in bed for a while with almost no mobility and it's been hard to do much of anything since my health seems to change from "I can't take this anymore" to "OK, I can live with this IF I have to," changing moment to moment almost.  But it all boils down to how much I can concentrate.  Let's just say that I'm happy this flare I'm going through (it's been upgraded to full flare status, up from the "mini" of the last few weeks) is happening to me during the summer months when things tend to be light and less stress is around. 

I actually read three books a couple of weeks ago!  Yippee!  The bright side of not having read much in the last three years (or thereabouts) is that practically any new books hubs now brings home from the library are ones I haven't read.  And so I have a real choice as to what I want to read as opposed to, "OK, since there's nothing better...."  You know: sort of like making a decision as to which person to vote for: the lesser of two unlikeable candidates in every election I've participated in since the age of 18.  But, I digress. 

Last month I wrote a post (link) where I listed some of the authors and their books which I thought would do well for those who may have difficulty concentrating on reading. This post was quite popular with good comments on twitter, etc, so I thought I'd let you know what I read a couple of weeks ago which put me in the greatest of moods - all because I was actually reading!  I don't know about you, but I'm always looking for good titles and often I mourn the ending of a book partly because it means I have to find something else as good to read! (More titles can be found on a long ago, but popular, post here.)

I've written before that I think that one of the ways to go if you have trouble concentrating because of the CFIDS/ME/CFS and/or fibromyalgia "brain fog," and have pretty much given up on reading is to go the series route.  It's an easier way to get back into reading when you have known major characters and the dynamics going on around them.  (See this post for more tips to reading if you have CFS/FM.)

So in that spirit I started with a favorite author of mine: Margaret Maron and her Deborah Knott series.  I hadn't read her last two novels, The Buzzard Table and Three-Day Town.  I enjoy Maron's Deborah Knott series but haven't been able to get into her newer series featuring Sigrid Harald - I need to give those a try again when I feel better. (I'm always aware that how I feel about a book or author can all too often depend on my health and how I feel when I'm reading and so I try to factor that into the equation of likes and dislikes.)

Margaret Maron combines her two series into one in her latest two books, most likely in order to bring in her massive Knott fan base in order for us to fall in love with Sigrid as well.  Unfortunately, I think that these last two novels aren't as strong as her previous Deborah Knott incredible successes.  This is not to say that these last two novels aren't still good reading!  It's just that if you're going to start in on this series - which I do recommend! - her last two are not the ones to start with.  There was also a lot of jumping around from different points of view in Three-Day Town which can be a bit annoying, I would imagine, to a lot of readers, but especially the fibro-brained ones who have difficulty shifting gears.  However, Margaret Maron is an incredibly gifted writer: she's quite impressively won Edgar, Agatha, Anthony and Macavity awards.  She is really worth checking out.

I have to laugh. I was so unsure of my so-called brain that I started reading a stand-alone novel by a favorite author and just could not get anywhere with it.  But I kept plugging along, determined that I would beat my fibro-brain.  After a week into it, and only at page 77, I decided that I wasn't going to torment myself anymore.  It was time to pack my bags, so to speak, and return to the dreaded TV.  That's when I happened to pick up Maron's book and realized that it wasn't me at fault in that attempt but the author.  So, remember to be kind to yourself as well.  Don't underestimate yourself.  Just find something that is actually readable and engaging! 

On to my big success: John Grisham's The Racheteer.  I've not read much of Grisham's books in a long time because they had become too predictable and his books have almost acquired a following-a-formula feel about them, with Grisham just churning out a new book each year - partially the fault of the publishing house, I know.  I admit I began reading the book only because it was among the huge haul hubs had dragged home from the library in this awful heatwave we've all been experiencing.  And how happy I am that I did read the book! 

I had forgotten how readable Grisham is.  The content of The Racheteer is first class, the characters as well. I had also forgotten how "simple" his writing is.  I don't mean as in "elementary" but more in the line of Hemingway's deceptively easy flowing prose: very clean writing.  Now don't get me wrong.  I'm not saying that Grisham is as "literature" as Hemingway - not by any stretch of the imagination.  But Grisham's style flows and is easy-going and his plot is captivating.  I was happy as my fibro-brain could follow and I thoroughly enjoyed the book.

As to what is the book about?  Grisham was asked to describe the novel in one sentence and here it is: "A federal judge is murdered, and our hero knows who did it, and why."  I thought I'd borrow a few reviews included on Amazon's site: 

Electrifying...carries the reader along one track (innocent man seeks exoneration) only to switch on to another (cat-and-mouse caper) halfway through this delicious, frictionless ease."   ~Guardian.

 And:

[T]his is not a story about a triumph or a miscarriage of courtroom justice. It's the more devious, surprising story of a smart man who gets even smarter once he spends five years honing his skills as a jailhouse lawyer - and then expertly concocts an ingenious revenge scheme... Mr. Grisham writes with rekindled vigor here."   ~New York Times

Wow.  Need I say more?  And note the "rekindled vigor" part of the statement! 

BTW: I seem to have lost my Kindle!  You know how I recently spoke about losing the very few items around my bed?  Well, my Kindle seems to have gone in the "lost sock from the wash" way.  Annoying, though I do have a few library books to pick from.  And good news: one of the rooms in the house which has a massive collection of books has been freed up so I hope to find some books in there which I'd like to reread. (See tips for reading for those with CFS/FM here.)  Amazon really should look into putting a location chip into the Kindle!  I'm going into Kindle withdrawal - words I never imagined, just a few years ago, would ever come out of my mouth!

I've also - thank heavens! - found a few TV favorites.  That will have to be the next post as I need to get back into bed.  (Being mature: how unlike me!)

Any good light reading titles out there, my lovelies?  I'd love to hear about them if so! 

In the meanwhile, as always, I hope everyone's feeling their very best - only better.  Ciao and paka!



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Determined to Read Again & Book Reviews

Reading in the school library in more stress-free times...

Oh for goodness sake!  I'm trying to write a post while fibro-brain appears to be at its worse?  My concern is: will I even make any sense?

But before I go on, I can't help "promoting" myself a bit. There aren't too many "highs" in my life, so this is a rather biggie for me.  Another blog, fibrodaily has a segment called "Fibro Warrior of the Week" and I was asked to be interviewed as their latest warriors, the seventh.  It came out yesterday.  Thanks so much FibroDaily: you made it all so easy and were so kind with what you said before the interview started.  

OK: enough with the odds and ends (moi) and let's get to the problems at hand.  

With the "cold" weather (understatement) it's the perfect time to curl up and read some mindless and fun books. If I'm to get back in my reading to where I was a few years ago, I need to get to the point where I lie down and not even notice the time passing by as I read.  So, it seems that for a while I'll need to forget Einstein's biography (true: what possessed me to buy one?)  or catching up on my Proust (made that one up) or reading about Malaria and how it ruled the world for thousands and thousands of years even into the present time in some places - like Papua New Guinea where my son "holidayed" not once, not twice, but three times when he finally came down with Malaria.  You'd think his mama would have taught him better!  But enough on the foibles (insanity) of my family.

I need books that will get my brain to start working out like you would exercise a muscle to stay in shape.  After all, in recent decades there were times when I had to force myself to read.  There were all too many days when my brain couldn't handle the usual and I had to adjust to that.  It was a funny time, one day a Harlequin-type romance, the next day a prize-winning novel.  In my shorthand way, I tend to say that I'm a moody reader.  However,  I've realized that's far from the truth.  It's that my brain simply can't tolerate or take in huge concepts, ideas, glorious writing which makes me gasp at the perfection of a word used or a sentence structure.  But in decades past, the Harlequin-type novel would creep in because the most important thing, as far as I'm concerned, is to read or you WILL lose that ability.  For example, I've never been the best at reading Russian, but I could do it.  The frustration set in because I read rather quickly in English but the Russian had always lagged behind,   However, in college I even read Dr. Zhivago in its original, plus a few other goodies.  But that sight reading is gone now.  So, use it or lose it!  I can't afford to allow this to happen with English.  

And so I'm into those baby-steps.  I focus on not thinking about my daughter and what she, as well as WE - our entire family - went through in her care.  I've had my own near-death experiences since my daughter's but enough time has passed that I need to get back to using that oh so important "muscle."  Now!  Fast and frequently.  Besides, reading is me.  I started back when I was four and would constantly get into trouble because I just couldn't bear not having a book in my hands.  I hear a title and it brings back memories of what we as a family were going through, almost more so than a picture.  

So, I'm admitting to a few books which I've read in the last few weeks, with the hope that some here will find a way to take a vacation from our DD:

• The Secret Keeper by Kate Morton.  I'd read her other novels and can't remember anything at all about them.  At the moment that's a good thing.  I find that if I reread a book, it's much easier to get into the reading habit, at the moment.  I certainly hope to progress beyond what I have already read, however. I did very much enjoy The Secret Keeper because it kept me guessing the "answer." I look forward to rereading her other novels. (BTW: forgetting what a book is about is not a negative: it's just the way my brain works.  I rarely remember what went on in a book a day later and that's one of the reasons I need to read a book in a single day or one sitting: otherwise I cannot  remember what had happened in the book the previous day!)
• My Mother Was Nuts by Penny Marshall.  This definitely belongs in the laughter category: by now I think everyone knows how I feel about laughter.  I've fallen in love with all the Marshalls.  What a family!  Funny as you would imagine, but there are so many more aspects to them to admire.  I love their love of family (despite the title: I won't give out more for fear of a "spoiler.") I loved this book so much that I then read her brother, Garry Marshall's, memoir, My Happy Days in Hollywood.   Anyone who grew up in the NYC area in the 50's and even 60's will absolutely love both books. BTW: I was able to "borrow" Penny Marshall's book for free with Prime on Amazon.
• Call the Midwife by Jennifer Worth is actually a trilogy and the last two are finally available here in the States through Amazon and kindle.  I absolutely adored the first book, and was extremely surprised that the TV version  actually respected the memoir, give or take a few minor liberties. I'm about halfway through the second book, Call the Midwife: Shadows of the Workhouse.  In this edition of her memoir Worth speaks about fewer people so that we can understand how certain things turned out the way they did in fewer characters' lives.  Her depiction of the workhouses is a great tribute/reminder to the horrific conditions that those "thrown" into those places had to endure.  It's a very compassionate and very well-researched book - though often as heart-breaking as it is eye-opening.  However, something about Worth's matter-of-factness and bits of humor here and there make this an enchanting memoir, definitely worth reading.
• I've rediscovered Nevil Shute's A Town Like Alice and loved it as much as I did 50 plus years ago. 
• I also reread To Kill A Mockingbird by Harper Lee.  Mockingbird really should be read every few years.  The love and gentleness of that particular era is striking. The quiet wisdom keeps you thinking long after you've finished reading the book.  You fall in love with Atticus with his quiet strength and goodness, as well as Scout, that observer of everything.  In other words, you fall in love with the characters all over again.  It's such a readable book and yet such a classic, perhaps one of the best American novels ever written.
• The Secret Life of Marilyn Monroe by J Randy Taraborrelli.  I knew very little about her, but just enough that I had the outline more or less already configured in this so-called brain of mine. This was a great reading foothold.  I can see the horizon where I'll be able to read almost anything that tickles my fancy!  Bring it on!  

As always, I hope everyone's feeling their best, only better!  Ciao and paka! 

Is Pacing Over-Rated?

  

Not my little room, but you get the idea.

It's truly amazing that in our CFIDS/ME/CFS and/or fibromyalgia world, we are never able to let our guard down.  Do so and continue ahead at your own peril.  The world, it often seems, is full of danger and you proceed as if you are in a minefield. (Can more clichés be added here?) Spontaneous acts achieve nothing, it seems, but add a bit of spice to our lives, though often at a price we're not always sure we want to pay. (Hopefully, clichés are now ended!)

I had a rough time of it last Friday.  It had been a rough week. I'd finally reached a point where I was overwhelmed by the insomnia, the migraines and dealing with the whole thyroid situation. Constant were the aches and huge pains I was experiencing and a plethora of symptoms I'd either not registered or have mercifully forgotten.  I was exhausted, too, by the fact that my painkillers were not relieving me of any of the nastiest parts of this DD and so I decided to go with Plan B, sigh.  When things are going too poorly, I get to a point where Plan B appears to be the only means of escape.

And I hear you!  What the heck is "Plan B," right?  Well, it's my version of Lamaze, the kind I started and honed as a child.  

I started experiencing migraines at an early age and ended up with a means of distracting from the pain without realizing I was doing so, or even acknowledging the pain was there in the first place.  My mom honestly never believed children get "headaches"; she was completely convinced that they only cause them.  So, I suppose my little grade school brain finally found a means of escape: do some mindless physical work to distract yourself from the pain.  As I wrote in Friday's post (link), that means of distraction turned into cleaning floors, and by the time I reached high school, I always had bright sparkling floors, be they washed and waxed or vacuumed within an inch of their lives.

Sadly, these days the only "mindless" work I can do is dust and, ironically - or according to "Murphy's Law" - it's the one household chore I absolutely abhor.  I LOVE to clean, but the DD has taken this pleasure away from me as well.  However, I thought SURELY I could dust!

And how the house needs dusting, and a bit more!  Any room near areas where our old wood floor under the old carpeting was uncovered and refinished was thick with dust, despite our previous attempts to solve this problem.  Any rooms near areas where wallpaper was taken down and then said walls spackled and sanded before being painted, are also full of dust.  We had air cleaners going, but they weren't able to accomplish much under the circumstances.  Consequently, between a few symptoms of the hypothyroidism and the dust, I was coughing an awful lot, not to mention that my voice was always hoarse.

So, on Friday I was in dire straits, a particularly bad day.  The insomnia, the thyroid, the pain, the sad look of the room where I keep my much-feared computer, the area where I put the finishing touches on my posts and often choose to tweet from was REALLY getting to me.  What could I do BUT turn lemons into lemonade, again?  It would be a risk, but talk about desperate times!  And talk about the need to feel better about things in the long-run!  Desperation was oozing out of me.

So, I decided that the books in the bookshelves needed to be dusted - thus finding what I thought was the "mindless chore" I so desperately needed.  Nothing comes easy, however. I did need to add a bit of complexity to the job by getting rid of anything on the bookshelves which wasn't a book.  I finally decided that if I couldn't pitch it, I'd go the chicken's way out: stick it into one of the kid's old rooms which is already a disaster area and thus have only one central disaster area to contend with later.

I know, it's double work in some people's eyes but I belong to the school of cleaning that thinks it's best to make one central mess to work from.  For me, perhaps precisely because of fibro-brain, it's the best approach.  Decisions are hard to make and the whole point of the exercise, after all, was to do a MINDLESS chore.  I'd already decided that the physical part be darned.

And, as is often the case with those of us with the whole CFIDS/etc and fibro fiasco life challenges, I went too far.  When hubs arrived home late from work, he ended up helping me "close up shop" for the day.  Books and all sorts of debris were all over the floor and walking through was like navigating your way through a minefield.  I might be a mountain goat who has no problems getting through, but let's just say it's a good thing hubs never joined a circus.  He'd have served well as dinner one night for the lions - after not mastering tight-rope walking.  But patience?  I have very little of it and he has it in spades.  I suppose that's part of what make us such a great team.  So floors were cleared and one section of the bookshelf was BEAUTIFUL.

As the evening progressed, I complained that my leg with the neuropathy was hurting and cramping and I then spent half the night dealing with THOSE pains in addition to the stuff I had relieved for a few hours while "just dusting."  Hubs was a bit annoyed, giving me sidewards looks that said loud and clear, "you SHOULD have been in bed resting."  I, in turn, was giving looks back to him that said, "you don't have to deal with migraines, do you?"  There was so much non-verbal communication going on that we could have written a long book from it and it wouldn't have taken much to turn it all into an unpleasant verbal conversation as well. (Joke, I think!)

So, going back for more of the "I-can’t-learn School of Irene's Science," on Saturday I decided to do yet another section of the bookshelves.  In my defense, I'll say that I hadn't slept for two days and two nights so not only was I in a desperate state but my judgment was just a TAD on the impaired side.  My foot was swollen even more, tight to almost bursting, my head was still throbbing ("throbbing," such a tiny word for what was really going on!) and I thought that the satisfaction from a job well done and a pretty room would be just the ticket to make me feel better, albeit only psychologically.  But hey!  Don't put down the psychological reinforcement and satisfaction.  Sometimes it's all you have!

After a few hours hubs arrived home.  Imagine how NOT surprised he was to see me hauling books, wiping them off, moving them from room to room, all while doing a seemingly good imitation of "Hop-Along Cassidy" because my foot was more swollen than before and putting any weight on it was close to excruciating pain.  Helping me clean up my mess, we ended up with an almost sparkling little room.

...and a surprise at the end.  To make a long story shorter (what?  This IS the short version of it all!) I ended up with cellulitis of the foot (and hands?). I'd spent so much time at the computer the day before (another Lamaze-type diversion) that the fluids built up in my legs, and then who knows what else happened?  Perhaps between the books and the manicure I gave myself, bacteria got into my system and bad magic took place.  Whatever it was, my hands were swollen to the point that I could barely bend them, my foot was swollen to the point where I started looking things up on the Internet (never a good idea when so desperate). My foot had become red, a rash had developed AND the foot that's always ice cold was suddenly hot as well.  In fact, I was shivering and running a fever.

So, moral of the story?  There's a lesson for me to be learned here, but I know myself well enough that I probably won't learn for next time, though I should.  But the joy I now feel when I see the room clutter-free and dust-free was and IS worth all the pain.  For me, it was a wise investment as hubs shakes his head at what he considers to be my insanity.  But a pretty room can never be underestimated as a healing power.  Now when I go to the feared computer, I get great satisfaction seeing bookshelves that are full of old friends I've not seen in ages.  The air cleaner has worked much magic in getting rid of the dust that was stirred up, despite the best dusting cloths. I can breathe clean air, not sanded-down air when I come into the room.

And, most importantly, when it comes down to healing: I had a "marathon sleep" of 12 hours. Yippee!  Really!  With the help of an anti-inflammatory and the antibiotic the swelling has come down enough where it isn't pain off the charts.  The fever is gone, the rash is on its way out, though my skin DOES have a reptilian look to it, the scaly look from the swelling and fever, a classic reaction to what went on.  The blue-black hue has left my nail beds.  I can see that things will soon be right with the world.

But sometimes a girl's gotta do what a girl's gotta do, despite the cost.  As long as everything is capable of healing - that is, I'm not at risk of losing any more body parts - I'm thrilled I took the risk and made some headway into a huge project.  I've said it often enough: sometimes to survive, you need to come out of the normal protective shell you're forced to live with.  Sometimes you just can't keep calculating every step you take and every move you make.  Sometimes fighting this CFIDS and fibro animal is not rest but a feeling of accomplishment and that you've had your way, not allowing the illnesses to defeat.  Pacing, I think, is simply too over-rated.  There!  I've said it, and THAT in and of itself makes me feel better.

As always, I hope that all are doing their very best only better.  (As if fibro-logic is ever going to win with me!)  I wish my old Russian Orthodox camp buddies and my relatives a Merry Christmas - we're always a bit out of sync with the rest of the world.  Ciao and paka!

Friday Tidbits: 10 Beauty and Hospitalization Tips

Considering that I'm in the hospital today and, at the very least, tomorrow as well, I thought I'd address a few hospital tips for those with CFIDS/ME/CFS and fibromyalgia, for a more "successful" stay.   Yes, I'm trying awfully hard to get this "Friday Tidbits" going and on schedule to boot!  Ah, what dedication!  (Ah, what boredom and a bit of nerves as well, I freely admit!)

1. Bringing earplugs with you can be heaven-sent if you are sensitive to sound.  I finally found a brand and type I love, Mack's "Dreamgirl Soft Foam Earplugs" (available at drugstore.com).  Normally, I feel earplugs are too uncomfortable to bother with, but these are really unbelievably comfy.

2. Eye masks are great for light sensitivity since it's never really dark in a hospital. I found a pretty generic type and for the first time ever, I'm not only able to tolerate it, but actually enjoy wearing one, even at home when I happen to finally fall asleep during the day. This is truly amazing since I hate most things on my face. I bought the "Body Benefits Satin Sleep Eye Mask," at drugstore.com.

3.  In my down time, to deflect from not sleeping and to try to ignore the pain, as well as the dreaded surgery to come (let's get it over with NOW is my feeling!) I've started in on my DIY facials, much like the long-haul flight treatments I discussed when flying out to Malaysia. I'm doing a good cleansing - hitting those pores and hyperpigmentation with everything I have! - along with exfoliation, treatment masks, serums, and other treatments like SkinCeuticals CE Ferulic Acid (see this link for my reviews here and here ) with moisturizer or Liquid Gold without moisturizer.  I'm indulging in the Sisley Express Flower Gel Mask, as well as my personal Hall of Famer, Elemis' "Papaya Enzyme Peel Mask" - not all at the same time, of course!  In other words, as I wait, I'm doing "the works" and enjoying "being a girl."   Who knew a hospital could be used as a spa???

Of course, I'm sure that later today, post-op, DYI's will be the last thing on my mind but as I stayed up all night with my usual insomnia and my out-the-wazoo pain, I'm trying to have some fun and trying to keep my patience to whatever maximum I'm capable of, which is, and always has been, almost zilch!  I've already experimented with one round of makeup and may be up for a second round if I get too bored and can summon the energy to go there again.  Actually, I'll try just about anything to make the waiting time go by faster!  And with the micellar water, it'll take just seconds to get any cosmetics off for the surgery once a slot becomes available.  (Yes, I'm shallow, but sooo easily pleased!)

4. I'm happy with myself and annoyed with myself, both.  I'm happy in that I managed to put quite a few mini-sized products into a "travel bag" but was more or less haphazard about it, knowing there'd be no real chance of a vacation any time soon.  I hadn't anticipated hospitalizations, however.  (Where IS that so-called brain of mine?)  So, after I was settled in my room, hubby made a mad dash home with an extensive list and had to scour cabinets and drawers for certain products and clothing, electronic devices, chargers.  You'd think I'm in here for, at the very least, a two-week stay!  Thankfully, he didn't need to start from scratch, but it was still quite a scavenger hunt.  The real basics were there, however, in one place, so, hallelujah!

5. I love flip flops for hospitals.  They are easy for "on and off" and afford more skid-free walking than slippers or those socks with "grips" on them.  But don't go for the real cheapo kind which are harder to walk in and cause any number of problems, such as blisters.

6. Try bringing a notebook: they're great for all sorts of things!  For example, I like to keep track of my vitals, even how I'm feeling. I should, actually, list symptoms but that's just so beyond me at the moment. Back to my "vitals," I came in on Thursday with a BP of 90/45 but am now, on Friday very early morning, at an unheard of - for me - 145/90 and 142/98, due to the pain factor.  If I hadn't written these numbers down, I'd question my memory, and rightfully so, because of fibro-brain.  I also make lists of questions for doctors and nurses, which meds I'm given and when - ESPECIALLY my pain meds - and who my nurses are/were because inevitably someone will ask me, somewhere at sometime about something saying, "well, who told you THAT?" and I have no clue.

7. I like to bring a bunch of my own washcloths and hand towels, and in colors other than white.  The washcloths and towels that hospitals carry abrade the skin all too easily, or bring on rashes and even hives.  So, I bring my own and in order to not lose them, in a color as far from white as possible.  I use a hand towel to dry my body since do you REALLY need a bath towel?

8. I'm loving those sponges on a stick which are used to moisten your mouth and lips - no water allowed, now going on well over 48 hours so far, and ice chips monitored closer than any restaurant chef with his precious truffles!  I think I'll try to get those for home use as well since the various lip balms I have are simply not enough.  Perhaps these little sponges can work synergistically with lip balms?  One can only hope!

9. Micellar Water, especially my beloved Bioderma, is a life-saver if you can't get out of bed for a good facial cleanse. I wash off the Bioderma with a damp washcloth and then put on a serum followed by a treatment (anti-aging or hyperpigmentation, for example), followed by a good moisturizer.

10. Since the air is so dry, I'm also using a "water-in-a-can" such as Evian or Avene. Its fine mist helps a bit with the very dry eyes I have going from so many pain meds, so every little trick helps!

So, there you have it!  I'm not sure when I'll be back since so much depends on how the surgery and recovery goes, fibro-brain the biggest concern, of course! Hopefully, I won't have too much down time - I wouldn't want you to miss me too much! (Joke!)

Wishing all a super weekend with everyone feeling their absolute best, only better. Caio and paka!

Friday Tidbits: Fibro-Brain

And it's Friday yet again!   How, I wonder, can the time move so quickly and yet so slowly, both at the same time.  It's been a heck of a week!

Since this is a bit of a potpourri, here are some of my (very) random thoughts and experiences.

• The hypothyroidism is about to send me over the edge.  Honestly, I thought I was finally getting a bit of control over my life, despite the fact that I knew that there is and has been something majorly wrong going on with me.  Good grief, I'm in bed almost 24/7 and had more or less resigned myself to this stage at this time, despite the increased pain and all the other symptoms that are driving me batty.  But the awful thought: I know that the thyroid problem (and the symptoms associated with it) are just the tip of the (new) iceberg.  But, as usual, in "Irene-land," I messed things up, just to make life a little more interesting.

I was to have blood testing done again last Monday to see what my thyroid level was, along with a few other goodies. Even at my best, I have trouble remembering to take my thyroid med.  I'd finally decided to take the new med in the AM, afraid it may interfere with the bane of my existence, sleep, or the lack thereof.

Well, I'm the first to admit that I am really awful about taking meds.  Fibro-brain at it's best.  Sunday afternoon I remembered I'd not taken it and since I was in the middle of something - probably looking woefully at the pores on my face? - I asked hubby to get me the med.  I was actually shaking so much that hubby insisted that he put it in my mouth - I'd been dropping meds right and left all week.  Trusting soul that I am not, I felt with my tongue that there was only one pill and chastised hubby for his mistake.   A suddenly rather pale-looking hubby asked, "what do you mean?" - clearly realizing what had happened.

When I'd started the thyroid med, we soon doubled the dosage.  For some reason (what? I have NO idea) I continued to take two pills after the prescription was refilled with the new dosage ... so I'd been taking double the amount of medication I should have.   Fibro-brain at its finest!!! :)  Oy vay!

• I'm getting a bit annoyed with the whole ME vs. CFS fight and which is worse and who has it worse and all the nonsense involved.  It is EVERYWHERE!!!!

It's not rocket science, people. If it looks like a duck and acts like a duck, it's a d*mn duck!   The term "Chronic Fatigue Syndrome" (CFS) is insulting.  I absolutely DESPISE it.  Why not just go back to calling it "The Yuppie Flu" and get it all over with!!!!   "Myalgic Encephalomyelitis" (ME) is better but not accurate either, plus it's hard to spell, a definite consideration with those who have this illness!   I, personally, prefer "Chronic Fatigue Immune Dysfunction Syndrome" (CFIDS) and it's the term I use in life, but that's not accurate either.   As long as you don't call it CFS, however, I don't really give a darn which name is used, CFIDS or ME.   But give me a break: stop the fighting and arguing!  It is all the same animal, just different politicians!   Full stop!  Period!

• On a lighter note - and don't even bother trying to figure out how I got here - after all, everyone in my family says they would never want to live in MY brain, even for a second.   But if you get a bad haircut, turn it around: it's Murphy's Law.  If you get an awful haircut and color, highlights, etc., it means that something wonderful will happen.  I got my worst haircut ever, as did hubby, for our son's wedding in Malaysia.   Just saying.... think about it - or not.

Finally, I hope all have a great weekend, and I hope everyone is doing their best, only better.  Ciao and paka!

One "Beautiful" Day in the Life of Irina Vladimirovna

Worried and exhausted....

Are you in the same boat as I am in when it comes to your face, body and sweating? Yes, that's right, another one of the "uglies," the sweats. 


You find that you need to be somewhere - be it a doctor's appointment, your son's wedding half-way around the world (ahem), or you simply need to meet with someone in your home for a thousand different reasons. But you have severe CFIDS/ME and/or fibromyalgia so how are you going to accomplish this goal?


You've taken your bath (hallelujah!). If you've thought things through, you feel you might be prepared. You've put out all the paraphernalia needed to get yourself clean and presentable, from washing your hair to washing your face with a couple of facial treatments thrown in - at the very least, hopefully a cleanser that's also exfoliated the skin because we do want to get rid of those nasty dead cells and encourage new cell turn-over.


If you've thought things through and planned, that means you've also thrown a serum of some sort onto your bed BEFORE climbing into the tub because if you'd been thinking clearly before the bath, you'd realize that after your bath, it will be a challenge (huh!) getting from the tub to the bed - you know you will collapse. Forget about towel-drying yourself completely or the wet hair: who cares? You're about dead!


What happens is that, hopefully, you have collapsed on the bed and not on the floor before reaching said bed. The little cheerleader in you is happy, rooting you on! The realist in you is nagging you. But the part of you scarred by society and too many ignorant psychiatrists and psychologists is worse than any military sergeant in basic-training yelling in your face, "you have to get up now! What are you...a wimp?" as you want to simply melt into the bed linens further, into the very mattress.


"No," you want to scream. "I are NOT a wimp!", although secretly you do doubt yourself deep inside because of the messages sent to you even by some CFIDS/ME specialists, who too often do not take into account how different each of our cases are.


You've now spent the vast majority of those precious "health credits" - the ones you'd worked so hard on saving in the previous days, weeks, even a month or two - on the initial part of the ritual. Something within you doesn't allow anyone outside your most intimate circle to see you when you are not at your best, and that most certainly includes those times when you and the cleansing part of your routine are NOT, let's say, "best friends." 


Your hand searches and hopes that you did indeed remember to throw a serum onto the bed, as well as a small towel because you're drenched in sweat. You feel as if you need to stand under the shower in order to wash off the sweat, but you couldn't take a shower to begin with because you have orthostatic intolerance and can't stand up. Forget about the chair in the shower bit: that's just another thing to fall over or off of and get yourself tangled up with, risking not just bruises, bumps but also body parts - as you well know from previous experiences, the hard way. Besides, rinsing off in a shower still will make you sweat all over again...it's the illness, stupid (you tell yourself!).


But you want the serum on your face! After all, your dead skin cells are (hopefully) gone and your face is ready to receive whichever treatment you've decided upon, in my case either a hydrating one or a "radiance" one to get me that special glow. (Eye-roll!)


Until just recently, I had an air conditioning unit stuck in my bedroom window and after I gathered enough strength to drag myself off the bed, I'd turn the a/c on. I'm sure if anyone were outside my window when the temperature outside was 30 degrees or worse, 20 degrees out there - that's below freezing for those of you on the Celsius system - they must have had validation that the family in our house was indeed insane. But naked as a j-bird, I'd stand(ish) in front of that sucker and let it cool my body off from the assault of taking a simple bath.


Ah yes....dried sweat. That's always a treat. But what else can you do?


Now, however, I'm trying to figure out a new system as the a/c unit has been removed and the addition that's my bedroom has been hooked up to the central system. I may try sticking my head in the little fridge in my closet and hope that works. There's the possibility of having a "volunteer slave" (huh! Think hubby or perhaps daughter) handing me cold compresses to cool my body temperature, which oddly enough is still at its usual 95.5.


Over the next two hours, I'll need to stop (lie down in bed), get up, put a bit of make-up on, rest, put a bit more make-up on, rest - you get the drill - over and over again.


Finally, my ordeal is over. The hair is about as good as it's going to get and the "beauty routine" is finished with eyeliner more or less in place - what can I say? I'm a product of my generation in addition to having invisible eyelashes and eyebrows. Hopefully, I've found something in my closet that actually fits and works. Between whatever my real weight may be and body fluid shifts, huge bloating -or miraculously, no bloating - my clothes sizes change drastically - even my shoe size - forcing me to have many different sizes of everything I wear, including shoes. Is it surprising that I live and die by the scale? It gives me a clue as to where to start on the clothes front.


But one final thing keeps going wrong: the sweats. No matter what, I can't keep my head from sweating. I can blow dry my hair throughout, but my scalp starts sweating and just won't stop. My hair frizzes. I start to look as if I've stuck my head under the shower.


I keep up with my make-up, but that, too, keeps sweating. Put on a layer of anything and the exertion makes my face WET! How is it possible to have dehydrated skin and sweating skin both at the same time, I constantly wonder? You envision a person in the middle of the desert, stranded, and you gulp water like crazy to make up for the water lost to perspiring, only to find yourself bloating even more, and the face sweating off any product you put on it.


So it's back to bed, yet again, flopping down and as you stare at the ceiling you try to think, what are you going to do? Your slave (hubby or daughter, sometimes both!) try to give suggestions you've completely forgotten because fibro-brain has set in long ago, big time. You ask how much time you have left until you need to leave the house or simply need to be ready and are told what the time is. You try to hold on to your last bit of patience because you don't care what the darn time is. You can see the clock or your watch perfectly well. If you were able to calculate the time now to the zero hour, the time you need to be ready, there would be no need to have to ask how much more time is left!


You're almost there. You know your hair is not going to get drier - that's a lost cause, but at least your scalp is clean. Your makeup's on, but unfortunately, it's just about to slide off your face.


Forget the shakes - you've long ago learned to live with them. Your "slave" helps you with the bottle of water that you chug down, with a supply of a half dozen more in a bag he/she carries for wherever you're going, and hands you the cane you have a love/hate relationship with. It helps keep you away from a wheelchair, but it IS a defeat and a sign for all to see that you do have a problem.


You walk out the front door, smiling at the world. Your daughter tells you you are better than any Oscar-winning actress because almost no one suspects how ill you are, wondering only why there's bit of a sheen on your face....


And very soon, we'll talk about how to get rid of said sheen, to make you look your best - so healthy, in fact, that it leads people to say those words we hate most - for oh so many reasons - "but you don't look sick!"


Until then, I hope all are feeling the best they can be, only better. Ciao and paka!


(Did you enjoy this post?  Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)

Identifying Sensory Overload - and how to deal with it.

Even had I NOT been an organized person, going to 13 years of sleep-away summer camp would have ensured it.  Here hubby and I are passing the experience on to our kids.

Before I forget: I'd love it sooo very much if you could go to my Facebook page and 'like" it.  You don't even need to be enormously enamored of me: it's OK...just "like" it, PLEASE!  Of course I'm not sure why anyone wouldn't actually like it - huh?  Ha!)  But I do need at least 30 people who "like" it (that's hitting the big thumb next to the image where the photos "icon" is up top) in order for me to get any sorts of stats from Facebook! 
This is the link. 


Pretty please!  I hate to beg but have decided that I can handle it if it gives me an idea of the number of readers going through that site and will perhaps give me a better handle on what my readers really do want to know! :) Thank you, thank you, thank you to those of you who have already liked it and I'm sure wonderful things will happen to you if you do: Karma!   And tell your friends if you have many of them, which I'm sure you do!  OK...enough degrading of myself! ;)


Now onto the subject at hand, dealing with yet another aspect of CFIDS/ME, fibromyalgia and its other goodies.
                                   **********************************************************************


Organization!  A decluttered house where there aren't too many items not needed, ridding my life of the things that don't serve a purpose.  These are the mighty and lofty ideas, desires and dreams I engage in these days:  well, if truth be told, I have actually done so for decades.  The crazy part is that I was actually BORN organized and one who decluttered, with the exception of the books in my life. (Would YOU throw out your friends? Aha! Point taken!) Everyone simply must have something that drives the partner in a marriage mad and these are pretty much the two biggies: the organization - hubby's downfall - and the house bursting at the seams because of books everywhere one turns, my downfall.  Oh, and photographs.  Oh, and the boxes my beauty products come in.  (See: I do like to be fair!)


But now that I live with my fibro-brain I find that organization is not just a help but is key, especially the older and sicker I become.  If there were only one thing that I could change about my family, "organization" and "decluttering" would probably be among my top picks.  It frustrates the heck out of me that no one seems to "get" just how much of a problem this is for me, how literally sick I get from the sensory over-load and how often I burst into tears from it - tears that lead to anger because I so detest them.  To me they are a signal of defeat and I absolutely cannot tolerate defeat: that's quite a slippery slope to doom as far as I am concerned.


When I do walk into my closet, for example, and see a mess, my brain short-circuits and I'm totally defeated.  To make things worse, with a mess I can't see what is right in front of me, big or tiny.  If things are moved around in the medicine cabinet, for example, or too many items have been stuffed into said medicine cabinet, I cannot for the life of me, literally, register that which is right in front of me because my brain fries.  Suddenly, nothing makes sense and I'm blinded.


I'm so adamant about the need for everything being in a proper place, and not having clutter, that I've used the "blind" analogy to my family for decades: I try to press upon them that were I blind, everyone in the family would KNOW that things need to have their assigned places and everything would actually be returned to its proper place, no one even questioning the necessity.  And yet, no one understands that I'm handicapped by messes and really and truly cannot see what I'm looking for if there is a mess.  Even on a "good" day this is a problem, but on a bad one?   It becomes a complete lost cause making me go downhill even further and faster.


The sensory overload not only triggers migraines, but in milder forms, more confusion, a sense of being overwhelmed and unlike the "old real Irene" who was almost manic for organization.  I now immediately start to shake, break out in a sweat, need to fight useless tears because several things happen: I can't begin to know how and where to start cleaning a mess, my body is too weak to clean up a mess and my brain can't even begin to understand where or how to start.  Imagine how frustrating this is to a person who, for example, used round plastic thingamabobs (much like the ones found in clothing department stores that are used for sizes) which I would slide on a rod of each child's closet and each thingamabob would be a marked stating the day of the week said outfit would be worn.  Oh, I wasn't a fanatic about it: the kids had choices, but there was always the system in place for most days.  Talk about cutting back on morning drama!  Each child had two weeks worth of outfits hung out for them.  It was survival: in order to be a half-way effective mom, I needed to keep things organized (each child was also color-coded with bins for shoes, school work, the toys that belonged to each child individually instead of them all as a group.)  


Furthermore, I resent the inordinate amount of time I waste each day to keep finding things all day long...and I'm talking about easy things such as the remote, cell phone and two pairs of glasses that keep getting lost in the bed linens!


Going one step further, when I get a migraine and need to take a med to smash that sucker out of oblivion, I often cannot even realize what needs to be done.


Many, many years ago, when my children were young, I once came down with a monster migraine while hubby was out of town.  Somehow I had the wits to call the kids' babysitter, a mother's helper almost, except that L started out with helping us when she was only 13 years old.  At that age and with my young "babies," I didn't leave her alone with the kids but she certainly spent a great deal of time at our house just helping me keep up with the three little rascals, playing with them in our tiny yard while I fixed dinner and so forth.


On this particular evening it was rather late to be calling anyone and I certainly didn't want her walking over to our house in the dark, yet I'm still not sure what it was that actually made me call her: it was just so out of character for me.  Yet there must have been something very off in my voice that made her realize that I was really sick.


"Are you having a migraine, Mrs. X?" she asked?  "Is your head hurting?"


I was too ill to answer and so by now 14/15-year old L kept on with, "Mrs. X.  You're having a migraine.  Walk to your bathroom.  Go to the mirror!  Are you walking to the bathroom?"


L commanded me through the paces of getting me to my migraine medication, knowing exactly where it was located in my bathroom, picturing in her mind where it was in my medicine cabinet, on which shelf, how many bottles from the end of which row, down to what that bottle looked like and how to open it.  


I've written before that back then the migraine medications were not especially effective, but the med I did take, thanks to our teen-aged L, was enough to keep me out of the hospital and my toddlers safe until hubby was due home.


If you need to convince your family or your roommate or whomever of the importance of keeping things organized, putting things back after they've been used, everything having its proper place, feel free to use my cautionary tale to drive home your point.  (However,  at the moment I feel like a fraud/failure writing this as our house is in such flux right now that NOTHING can be found nor are we even sure if we even own a lot of things any longer!  Darn you, remodeling!)


Just as a glare can trigger a migraine, so too can a brain short-circuited from seeing a mess.  Of course, the reverse is true too: nothing puts me in as good a mood as seeing a clean and decluttered room with everything in its place.  And in an emergency, having things in their place can be crucial.


On that day, L won her stripes and I never worried if I needed to leave the kids alone with a very mature 14/15-year old if I needed to run a quick errand.  We were all lucky to have L as our official babysitter as she grew up into a young lady who eventually left home to go to college and start her own family and when we see photographs of birthday parties she helped me manage from becoming total zoos and photographs in which we celebrated many other milestones of our lives, we remember her fondly.


Perhaps that should also be a tip: find yourself a L.  But I can tell you from experience, they are hard to come by!


And I am now going to go play one of my mind-games: I'm going to go directly back to my bed, but on the way I will put 10 things away.   I like the game, "The Power of Ten," since it's about the only way I can get anything at all done these days.  And since I had the audacity to write it down here, I must carry through!  Sometimes I think I'm my own worst enemy!


But to sum up:

• Being organized is key to keeping you from totally going nuts.
• Owning less rather than more is especially important to "our" lives and getting through them.
• Everything in its place is a downright birthright - not to mention an important survival strategy.
• Playing mind games that work for you gives a huge heads up.  (More on that in a later post!)

I hope everyone is feeling as well as can be, only better!  Happy weekend to all!

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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