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.
Showing posts with label pacing. Show all posts
Showing posts with label pacing. Show all posts

Monday, January 7, 2013

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!

Wednesday, October 10, 2012

Do As I Say, Not As I Do! ;)

It's all a balancing act: walking up First Avenue to our apartment in NYC with baby trying to climb onto and off my shoulder!
I apologize for having been MIA since Friday (in case there are masses of faithful readers out there mourning my absence and my ever-so-witty humor *ahem*) - but this CFIDS/ME/CFS and fibromyalgia body of mine has been betraying me at every turn - or so it seems.  This happens to me every single autumn/fall as the barometric pressure changes have their fun toyng with me, whereas the temperature changes do THEIR damage.  MY rheumy told me yesterday that all his fibro patients are absolutely miserable.

This year has been so much worse than in years past.  I daresay that this year is right up there with the second year of my adult human growth hormone (HGH) "deficiency" drama - when I was surviving only on fumes. I finally had to be hospitalized in order to simply keep me alive until all the red tape of approval came in, an almost two-year process when all was said and done. We all worked feverishly on my survival, such a nightmare, especially since we weren't even allowed to pay for the HGH out of pocket until the approval by all parties involved got their act together.

And then we had the whole "compartment syndrome" surgery/fiasco just eleven months ago, when all my organs started to shut down, and everyone just concentrated on keeping me alive (the little dramatists), one of those "worst of" years.  So when I say that this is one of my worst periods ever, I have some pretty good company to compare things to - and I've spared you many more incidents, since I - all together now - am trying to make these posts shorter! ;)


It's even difficult to say how much worse it is this year: 100 times worse, 1,000 times worse, a million times worse?  All I know is that I'm "rather" miserable and sicker than I have been in eons.  

Now, I'm not writing this in order to gain sympathy points or votes - that would be rather silly. What I'm writing about is my reaction to being this "new" sick.  Some include, but are not restricted to:
  • My legs are like jello and often can't carry me.  I end up crawling a lot.  I'm like dead weight - if hubby is at home, he tries to help me to the bathroom, but dead weight that insists on falling is not the easiest feat to accomplish.  And no, I don't drink, as one doctor in the ER once tried to ask my daughter behind my back - whereupon my daughter started to laugh her head off - a rather long story I'll spare you.  
  • When I sit up to get out of bed, my head starts to spin and I see dark spots in front of my eyes - or light spots - and it feels like it's going to implode or explode - I'm not quite sure which.  
  • My pupils aren't dilating and contracting the way they should be, even with no medication in my body.
  • My head feels so heavy, as if it's made of some sort of heavy metal, because it wants to hit the closest surface, usually the floor, face down.  If I'm lucky, I hit the mattress and just lie there unable to move at all for about 15-30 minutes, making it quite uncomfortable for the rest of the body hanging off the bed.
  • My veins, especially the ones by the wrist start to feel as if they are going to either explode of implode.  
  • My whole body starts in with these jerky sways, then jerky shakes.
I think you get the messages.  These symptoms are just the tippy top of the proverbial iceberg. 

However, to make things worse, I've found myself engaged in two behaviors that are doing me no favors. However, having weighed all the options, I've decided that I should go on or just do as much as I can.  Mind you!  DO NOT FOLLOW MY EXAMPLE, but rather as I say, not as I as I do, because, after all, I'm an old bat!  Most out there have their whole lives ahead of them and also have not been ill very long.  For the newly-diagnosed patient there is the problem of whether or not a near-cure could really help, if not a cure, period!  Looking at you, spoonies, I have real faith in the cure being found!!!  But getting back to moi and my self-absorbed self (yes, I do see my failings):

  • I've been acting like a bit of an "in your face teenager" daring my CFIDS, ME/CFS and fibromyalgia evil fairy. Just as I did wrong with the "non-stop eating" celebration of the dreaded and surprising hypothyroidism, I'm daring, in a way, the DD "fairy," to inflict more damage onto me like a playground bully, though this bully is so much stronger than any bully from school - as I should well keep in mind.  
  • I'm mad!  I'm angry!  I've had it.  I've adjusted, compromised, accepted so much of this stupid, idiotic illness for 38 years and I realize that really, I don't have but so many years left - after all, I've closer to 80 than I am to 25!   I have to do what is right for me and not live someone else's guidelines or dictates, because I've wasted enough time already.  I've been ill way too long and realize that in the next decade or so nothing is going to cure me and nothing is ever going to give me back even 10% of a normal life.  Like the person who got severe polio before the vaccine, I'm never going to get well enough to really live life.  Oh, I'll keep fighting - it's part of my nature and DNA - but I'm also trying to accept reality with what will give me a semi-normal standard of living occasionally.
  • The holidays are coming up and I refuse to live a "Green Acres" life, the old sitcom where the couple from NYC buys a house out in the country and can never finish remodeling the hovel.  Our remodeling has been going on for 5 years!  Good grief!  The only saving factor about the kids going away to school was that my house would finally be immaculate.  Wrong: I was soo naive!  I live in fear that the remodeling will be completed the day before either hubby or I keel over and we will not have enjoyed a finally put-together house! (Almost!)
  • The holidays are coming and that is a big problem for me.  I do not do well with holidays. I used to decorate the house with absolute perfection, down to the Christmas china, chargers, baking peroshki's and cookies, at least 3 or 4 different cakes for dessert.  We'd have Christmas parties.  Even my book club finally decided that each December meeting would be at my house because (LOL!) why bother at any one else's?  (Fine solution for me as the house was washed and sanitized to a inch of its life anyway!)   
But now I have to figure out a way of dealing with all these emotions, planning what is feasible, what isn't, what I won't give up, what I should.  I do know that I will TRY and do all within my power to drive myself harder this Thanksgiving (and hubby's birthday!) and this Christmas than I've been able to in the last 5 or 6 years, because our family's had incredibly bad luck, as well as good luck, health-wise lately and we have much to be grateful for. I want to fall asleep every night (or day or whenever this dysfunctional body decides it'll give me a break and let me sleep a bit) feeling as if I've accomplished something.  Last night I was able to crawl through two rooms that are jam-packed with everything from other rooms and managed to find 3 "must" tablecloths and linen napkins, was able to crawl to the washer and managed to do 6 loads of laundry.  Hubby took care of the dryer (I trust him with the drying part, but never the washer!) and he folded them away to take to the cleaners for pressing. 

That's three things down and how many hundreds more to go????


If anyone has any tips as to how to get organized for the holidays in the easiest way or hints for getting through it all, or any part of it, period, we'd all love to hear it!  

In the meanwhile, I hope all are doing so very well, their very best, only better.  Ciao and paka.



Tuesday, July 17, 2012

Will I Ever Accept My Reality?

In my wheelchair in Amsterdam, I never noticed the awful color of my lips, my hubby's signal as to how I'm doing! 


How long exactly, does it take to recognize and realize that one is sick?   And I mean truly, life-altering sick, not just getting laid up in bed every now and again?


It's been well over 35 years that I've been ill.  Unfortunately, I suppose it wouldn't be too much of an exaggeration to say that somehow I am pretty slow in the understanding of consequences with this illness.  Somehow I keep thinking that tomorrow I will wake up and be back where I was in very early 1975, running around with my course work, teaching, dating, going to parties, planning my future as to whether I should get a PhD or go to law school, agonizing only about how I would leave so many really incredibly fantastic friends, ones who later proved to be worth much more than their weight in gold when I became so sick.


I can't seem to recognize the reality of my "life style," and yet my hubby and I could never count all the hospitalizations I've had over the years.  Heck, there was one year alone that I spent more days in the hospital than I did at home.  There hasn't been a year at all since 1975, I don't believe, without a good lengthy and serious hospitalization.  I can't even remember the names of all the doctors I've been to nor the names of many of the medications I've been on and there have been times when I've been on 25-30 different meds at one time!  And before anyone expires from seeing that number and thinking I've gone to quacks, let me assure you that I've seen the best except in those cases when I was told that I should save my money and energy because there is nothing that THAT particular specialist could recommend or improve upon!  (HOW depressing is THAT???)


I am still on such a vast number of medications that literally half of my carry-on bag on the plane was filled with said medications, and that was with packing some of those plastic amber containers inside one another like little "Matryoshka" nesting dolls, the smaller ones inside larger ones, tripled up in quite a few instances in order to save space.  


Oh, I knew I'd get sick, real sick, from the trip, but it was all so abstract until the time came to pay the piper. Somehow, I kept thinking, in the dark recesses of my mind, that surely I exaggerate my illness - though whether it's because I've been told so by society for so many decades, because early in life I learned that I can overcome anything I set my mind to do, whether it's out of sheer conditioning, or even stupidity, I'm not sure.  Perhaps it's perverseness because my family is always giving each other looks when I come up with a great plan or because I just want to shock the hell out of everyone who's written me off, or perhaps it's because of my family's tendency to treat me alternatively with kid gloves or to dismiss my plans.  Whatever it is, I still cannot believe that I am really and truly ill.  


I also know that I spend entirely too much time very angry and disgusted with myself, wasting precious energy. After all, I look like everything I've always abhorred, the lazy person.  Worse, I can't do the things I love to do. Just today I spent way too much time trying to analyze how I would wash a wall that is all mirrors and the only thing that made me realize how stupid the move would be was NOT because I came to my senses but because I realized that the painter who took down the wallpaper in the hall will need to plaster up and sand down some huge cracks and gouges, thus rendering cleaning of the glass wall a, well, extremely idiotic move!  I spend too much time silently angry with my family as well, feeling as if they cramp my style, especially when they point out the signs that indicate that I'm not doing well.  I hate that they just might be, or are, right.  


And, of course, they're right - that's what makes it all so frustrating and truly maddening!  When ever-annoying hubby tells/begs me to stay in bed and not do anything, there is a perverse part of me that wants to rebel.  I HATE being told what to do, so hubby tries not to "warn" me, but some days I suppose the temptation is too strong and he goes against his best instincts.  I mean, I really hate any limitations.  Looking at a profile of what someone described me as on Classmates.com, I was delighted to see the main characterization as "gutsy." I'm quite proud of that description!   I was a tomboy who actually jumped off one-story buildings quite frequently and would get so disgusted with my poor younger brother because he objected! (What a killjoy!   Hummm...he also didn't want to shallow-dive off a fishing pier where I then was almost paralyzed from a misjudgment in how deep the water was - only inches - again, what a killjoy!)


But as disgusted as I become with the "guidance limitations," I must admit that this week I've almost passed out dozens of times, quickly grabbing hold of any near-by furniture, or a wall, as I see stars, then blackness, my head spins, my legs start to melt, I feel my blood pressure dropping and I break out in a sweat, getting all clammy.  It's very annoying because I would really like to unpack my bags.  This is usually a two-year project - REALLY - and I gave myself a two-week deadline this time.


And we SHALL see.  I am, after all, on a self-improvement quest this year.  I've had it with doctors at the moment and am determined to live life MY way this year and darn the consequences. I want liberation! I crave liberation and darn it, I deserve liberation.  I'm so tired of counting and analyzing each step I take and though I do want to do a lot of the things that do help me, I'm mighty tired of marching too often to other peoples' drums, especially since I've practically pioneered this darn illness.   Few know the poop that's coming down the pike for them because so much of it IS so phantasmagoric.  Oh, I can just hear shrinks galore saying things like "delusions of grandeur" to the other side of the darn spectrum, "she's sooo in denial" to everything in between.  It's rather scary putting your thoughts out there because there are so many "shrink" type people who will just love to analyze what we write in our posts when they have little more to do than clean out their bellybuttons on listless weekends.


And yet I look at those coming down with CFIDS/ME/fibro and its myriad of complications, especially the young "kids" in high school and/or university, and want to scream at the top of my lungs and shake some sense into them and say, "look at me and do NOT do what I did!  Take a page out of my book.  Do you really want to end up like me???"


How I wish I could shake sense into them! If I could, here are some points I'd like to make:


1. Do not overdo at all.  This is a cardinal rule.


If you are in school, do not force yourself to go to classes and finish your degree(s) "on time" or even early.  I do not know what my rush was all about other than I had tunnel vision, school cost money I didn't have, so I took too many courses each semester in order to finish early.  One Vietnamese accupressurist who did some of the most gifted work I've ever witnessed and experienced made an interesting observation about six months after seeing me weekly, a man of VERY few words: "I never meet someone so dead who still alive."  Did I mention that he spent approximately six years in a Vietcong prison under some of the worst conditions imaginable?  (I only know this because people like to tell me things and I'd be asked, what did so-and-so tell you today?  I heard him TALKING to you through the wall!")  He also pointed out that I was never able to do much with the degrees that I'd earned, due to my illness.  I sort of screwed myself big time, in ordinary parlance!


2.  Today we KNOW that the best way to beat this nastiness is through rest, pacing, lessening the stress load, etc., but the more you do during this "window of opportunity," the less the chance of overcoming this nastiness.  This is tough love talking here, reality!


Unfortunately, the longer you go sick, the harder it is to overcome this illness and that's why it needs to be nipped in the bud.  When Ampligen first came out, there was a reason for the five-year cut-off date.  It's believed that once you've had the illness too long and too severely, you're dead meat, so to speak.  My analogy, though a bit flawed, but enough to give you the idea of what I mean, is that I am the patient who got polio before the vaccine.  No amount of help cured the polio victim.  But though we still don't have an ME vaccine, we do know that with proper rest, for as long as it takes, CAN work to get you back to pretty much normal.  I've seen it happen: not often, but in the cases I've seen, the attitude was the very opposite of mine: total dedication to selfish resting, no helping anyone, no exertion of any kind, total devotion to self and determination to getting better and screw anyone else out there.  It's not easy and at the time it took a lot of selfishness because NO ONE was advising the amount of rest and relaxation really needed and the amount of devotion to it.


3.  Tiny CFIDS/ME factoid:  I also found it interesting that the further you get from the equator, the higher the incidence of CFIDS/ME/fibromyalgia.  To me, this reinforces the "overdoing" concept.


I was shocked the first time I heard this, in a jewelry shop in Amsterdam, of all places, because the lady waiting on us asked about my "condition," since I was in a wheelchair and the shop WAS teeny tiny, to put it mildly.  The first part of the surprise was that she knew as soon as she saw me that I had ME. Her sister had it too, quite a bad case of it at that.  I find it amazing how often we in the CFIDS/ME/CFS and fibro community can recognize one another. I'm convinced that we must give off some sort of signals, looks or even ME pheromones to those in the know!  At any rate, hubby, who's quite a bit more in tune with these things than I've been at times, had quite the discussion with the woman and I learned so much that day. To be frank, at first I thought the woman was a bit nuts but hubby assured me that this was indeed one very much-discussed consideration at the time. There is a theory that the colder climates make for less rest than in warmer one. That is, living in colder climates produces more Type A personalities because in hot climates it's believed that the heat zaps one of the energy to overdo. Interesting.  I also think that was the day that made me realize it was indeed OK to use a wheelchair if I needed it. I finally made peace with it, not feeling quite as much the fraud, the person begging for attention, all because I got validation from someone in the oddest of places and circumstances.


But what I haven't made peace with is KNOWING just how sick I'll be from anything I do...  I just have no radar for it and certainly no tolerance for it.  I suppose it just goes to show us how much our youngest years influence our lives and then how much society influences that "baggage," be it good or bad.


And so, I doubt that I'll ever truly come to believe that I'm really sick.  I'll play-stop to a certain degree to make my family happy or to stop them from saying the same message in a thousand different ways, "but mom!  You knew what would happen!"


Ah, but do I really?  I think not.  Had I known I'd be this sick from flying to Malaysia would I have done it?  Well, I didn't believe I'd get THIS sick (after all, it's been six months since my last hospitalizations - I was on a good roll! ha!) but yes, you can bet your sweet bippie I would have gone anyway!   Because really, I have a hard time believing that when all is said and done, I have anything truly more seriously wrong with me than a weak will.


Tuesday, June 12, 2012

I DO treasure that which remains behind....

...That though the radiance which was once so bright 
Be now for ever taken from my sight, 
  Though nothing can bring back the hour 
Of splendour in the grass, of glory in the flower;  
  We will grieve not, rather find 
  Strength in what remains behind....
     ~William Wordsworth  (from "Ode to Intimations of Immortality")

It may seem absolutely ridiculous to some out there that a person who is supposedly so sick that she's bed ridden and, for huge stretches of times, is in bed 24/7, who can no longer cook for herself, who can't eat sitting up, who has a hard time talking/dealing with more than one person in the room at a time thanks to sensory overload, should be so interested in such trivial subjects as eyebrows. When I wrote part 1 of the miniseries, an hour after I hit the "publish" button, I was so embarrassed, thinking, "Good grief [actually my real words have been cleaned up], if someone stumbled onto this site right now, they'd wonder how and why someone so supposedly ill would go on and on about such trivia?"  If she's THAT sick, the thinking would probably go, shouldn't she somehow be out there participating in the name change of this awful illness?  Shouldn't she be using her time, and the energy she does have, more profitably on patient advocacy...or any number of other lofty issues/problems?

My answer is that I'm tired of living in that world of only going into the noblest of discussions and activity.  I've now lived with an illness that has so devastated me and robbed me of the "core Irene" that I am an Irene my husband never really knew, and my children don't remember, the more energetic, albeit already sick, mom.  It breaks my heart when I find out that my oldest often tells the stories to the youngest (and they are only three years apart in age) of what mom was like when she wasn't AS sick as I've been for the past twenty five years of the thirty seven years I've had this DD.

Just for a while, I'd like to live in a world not dominated, every single moment, by CFIDS/ME/fibro and its many parasitic hangers-on, as in severe insomnia, pain, light/sound/smell sensitivity, falls, swollen lymph nodes, migraines, tinnitus, BP craziness, neuropathy, IBS, the daily shots...the list goes on and on.

Furthermore, I think that for most of us, we generally DO feel better around beauty.

The other day, I happened to test out a new nail polish.  Given my limitations with "the Claw," I decided I'd paint only my left hand's fingernails.  After all, I just wanted to get an idea of how the color looked on me, the way it goes on, would there be a streaking problem.... I told myself (yes, I often talk to myself and hubby is always saying, "What? What?" not, altogether sounding much different than Ozzie Osborne - oh sweetie, you know I love you!) that I needn't give myself a  perfect manicure. I knew that trying the perfect manicure at that time would only lead to frustration because my left hand is still a huge problem, now, six months post-surgery. I told myself to just slap it on and then take it off after a day or so, and that later, when finally in the mood (come on!  It COULD happen!) I would then go the "perfect" manicure route.

And so last night as I was actually reading a book (yes!  Hallelujah!) and holding my Kindle with my right hand but clicking those pages forward with the left while lying on my customary right side, I suddenly noticed how pretty the nail color was, how perfect it looked on my hand and that this color has the potential of being a "really good" buy.  It put me in a great mood for a few moments, much better than a host of psychiatrists, psychologists, or life guidance coaches could ever hope to achieve, including my GP, my hubby and even my kids.  It's because I saw something pretty, with the same reaction that I feel WHENEVER I see something pretty...be it a daffodil, a vacuumed, dusted and sheet-changed bed and bedroom (MINE, of course!) or a pair of cool boots (though we won't go THERE for a while!)

I know it's superficial to to be hung up on one's looks too much.  And despite all appearances, I really am not crazily so.  Yes, I may be a bit of a beauty product junkie, but we all need to have a side of us that's not always focusing on the bad, nor problem-solving the world, nor the awfulness of this illness and what phase we're in with this DD.  A long time ago, decades actually, I wrote that it's not right to compare the CFIDS/ME/fibro suffering to any other suffering because ALL SUFFERING is suffering and it all hurts.  What we need to do is find a way to live with it, to minimize it.

I've found that in my life, I'm always looking for ways of improving my condition.  If I can, for example, eliminate carbs from my diet and see a .05% improvement, then another .15% improvement from massage therapy, then you know what? - I'm going for it!  It's all a matter of good old arithmetic and common sense.  If you add all the tiny bits of help - this, that and the other - soon you have an improvement of 5%.  And that 5% can make you or break you sometimes. Add more little improvements, and soon you're doing 7% better, add another "successful" med... I think you can see where I'm going.

I suppose this is where I get the most frustrated and upset and even angry: when I'm told by ANYONE, be it dietitians, doctors, "friends," family member outside of the immediate family circle, that I should try this and that.  I meaning I've had this illness for thirty seven (expletive!) years.  How stupid do they think I am when I'm told I should do this and that, by some very rigid people who have, when all is said and done, absolutely no idea what is happening to me internally.  They may see some symptoms, but not all.  My close ones, the immediate family, however, know when I've gotten too sick, be it from the blue to colorless lips, the slur that appears in my speech, the balance problems, the difficulty I have finding a word, the sweat covering my face and scalp and then the rest of me, the dry mouth which makes my teeth and tongue stick to my mouth so it's almost impossible to talk, the croaking sound that comes out when I'm so exhausted or under such pressure that my throat constricts.

Case in point and wow, this is a huge bugaboo of mine: exercise and pacing do NOT work, for ME!!!!  (Boy!  That felt good to say!)  Normally I do not advocate violence but sometimes I just want to smack someone "upside the head" when I hear the THEORY of exercise and pacing.  Been there, done that, long before many of those propagating this advice were even born!  What's more, I've come up with coping mechanisms which I thought were what anyone would give a try, only to find out that no, they're quite unique.  My daughter calls it being an actress and says I should get an Oscar.  I don't mean to employ dozens of tricks that make me appear "normal" to most...it just happens.  It's been evolving for decades and I can't even begin to explain them to you, just as I could never begin to explain how it is that I breath, I eat...it just IS, it just happens.

And understand, that I'm in no way saying anything negative which anyone here reading this blog has offered in the way of help.  I've started on my evening primrose oil, made as a suggestion by my old HS friend reading my blog and I think I see an improvement, though I can't yet be sure because I only got to it a week or so after the suggestion was made and then I forget half the time.  I've called my doctors and questioned the histamine angle only to be told that yes, that's been ruled out and often.  These observations and comments are made by those who don't just blithely say, "honey, if you'd just get your Be-Hind out of bed, you'd be healed!"  I feel no judgement on their part, as I've felt no judgement on any one's part who has offered suggestions here.

Besides, presumably, anyone giving me a suggestion here on this blog has actually read enough of some of my most deepest thoughts regarding CFIDS/ME/fibro and has read enough of my history to at least make a suggestion that makes sense.  It's the out-of-nowhere suggestions that are depressing and frustrating.  It's the rigid suggestions, like the ones that claim anyone and everyone who has CFIDS/ME/fibro will be helped by exercise, because it just isn't so with me...and I know it's not so for a lot of people out there.  I get so angry sometimes by that old chestnut of "You must do this," "you can't do that."  So many of us already experience so much guilt and on so many levels: do we really need more?  And God save us from those who think that if we tried things with more effort, we'd be magically cured.  I don't even want to go there!!!

I mourn the loss of the old Irene.  I hate all the things that have been taken away from me, a bit at a time, like baking bread a few times a week, gardening every day, visiting with friends and so on.  But I still have a lot of good things happening to me and I try to keep those things in mind.

And yes, I want to be more than this illness.  I hate that illness defines me in so many ways.  Sometimes, I admit, I do things I probably should never attempt, but really, how much can one be caged, even in a gilded one?

And so, knowing that beauty helps me cope - beauty of all sorts: the beauty of a wonderfully phrased paragraph in a book I happen to be reading, the beauty of flowers in bloom, the beauty of the hills around the town I live in, the beauty of a clean and organized, dirt/dust-free room, the beauty of the engineering of a particular product...well, I'm going to go on with trying to appreciate those things as long as I can, because for me, it adds to the quality of my life.  This seeing of beauty in what remains behind makes me usually realize that life is good and pursuing the good things in life is often what keeps life worth living.

Wednesday, April 4, 2012

..the good, the bad and the ugly (skin!)...

My mom and I on the crazy trip to visit my daughter: we were NOT in Florence!

Skin problems are often seen in people suffering from CFIDS or CFS/ME.  And because of the various symptoms/conditions we pick up along the way as a result of our wacky immune systems, at times our skin can develop rather major problems.

Out of nowhere around 1998, I suddenly developed huge hives over my entire body. My feeling? Crud.  I'd already had pityriasis rosea, a childhood affliction which I managed to develop as an adult.  I also got a nasty case of shingles after my children came down with chicken pox, all three right in a row.  

The funny thing about the shingles episode was that it is rarely seen (at least back in the 80's) in young adults but is seen mostly in the senior population whose immune systems are compromised.  This should indeed have been a bit of proof to the doctors whom I kept telling that there was definitely wrong with me. (Please imagine an eye roll here. Thank you!)

Another point I found interesting is that in order to have shingles, you need to have had chicken pox first, something I never had as a child.  Doctors have told me that I must have had a sub-clinical case, one where I had chicken pox but never actually came down with the bumps and markings.  I still have a hard time believing this is the case because my mom and I have examined each and every possible medical event in my life and there simply never was a time that I had the virus in the form of chicken pox.  Surely I would have run a fever at some point, at the very least.  But really, as a kid I was as healthy as an astronaut prepared for space travel.  No ear aches, barely a cold, though I did have the occasional sore throat and, of course, headaches.

Furthermore, our systems are so messed up that it wouldn't surprise me if I'd never had it and simply went into it, bypassing the root virus.  I mean, who REALLY understands these things?

So, here I was, stuck in 1998 with these huge hives which made me into an itching machine. Some of the hives were plate-sized and in some areas the hives had hives.  Honestly, I looked as if I belonged in some sort of freak show. Worse, my daughter had moved to Florence because NYU had suddenly been gifted a breathtakingly gorgeous Villa by a generous benefactor and was spending a semester there. Lucky girl.

I love to travel and I was sorely missing my daughter.  I know you can guess what's coming next... but you might also be surprised.

Amazingly enough, time-wise, I had just spent an entire year going to a holistic clinic in Columbus, Ohio, every week for an entire day or two or even three at times, of intensive treatments for my core problem, CFIDS/Fibromyalgia and the off-shoot problems.  More on this part of my "journey" at another time, however.

Because I felt relatively healthy, I thought I could handle a week of seeing my daughter, and the trip wouldn't be too much of a financial burden since I had the frequent flyer miles to make the airfare a nice zero dollars.

But (and really and truly, there always is a "but") I broke out in hives a couple of months before I'd even imagined this trip to Florence. Pitiful. I did NOT want to go the steroids route and resisted it for weeks as I itched, scratched and was totally miserable from this wicked state of affairs.  My weight was at a comfortable place and I really didn't want to become an eating machine with the off switch broken yet again.

When the idea of visiting my daughter in Florence came up, however, suddenly the steroid option started to sound good. And after a course of steroids, my hives disappeared for a while. Just as I was about to leave, however, the hives came back and I needed a steroid shot again. To give a quick summary of the hives aspect of this story, I'll simply say that those hives did return and continued to do so for quite some time until we finally found an anti-histamine that I've now been taking for years as a prophylactic measure.  As soon as I forget to take those little pills, the hives would come back.

My point?  All too often, skin issues are a very real, often severe, and an always annoying issue for "us." Thankfully, I have developed a huge array of options now which don't include steroids (knock on wood!), which often help me avoid drastic measures. Saturday and the following days after my beauty adventure was one such example.

Once hubby and I walked into the "beauty heaven" on Saturday and could collect our thoughts before starting the whole rigmarole, ever observant hubby asked me what the heck had happened to my neck and decolletage, the fancy word for the delicate skin on the chest area. I had huge, and I mean HUGE, blotches on my neck and chest, and I'd used nothing but my regular Dove when I showered.  A couple of areas had what looked like scratched bumps which were open. I suppose it was simply too much for my system to wash as well as go out - too hard for my system to endure.

This had happened in the past, just a bit.  I remember being embarrassed once while at an appointment with a cardiologist - a five-minute trip from our front door.  But Saturday's redness was way beyond what I'd seen in my "normal" past episodes.

To make things worse, the further along we went on with the day, more redness kept appearing, seemingly growing as if it were being fertilized.  At one point ever-observant hubby said it looked like he had tried to strangle me...and done a messy job of it at that.  Angry, red, though thankfully no welts, it looked almost as if someone had poured acid on it.  I must admit I wasn't too concerned and explained that this happened practically every time I went out, ever so patiently - as well as condescendingly - to my nosy hubby.

Got home and WOW!  What a shocker to see the mess in my own (larger) mirror and to realize that it had progressed during our ride home.  OK.  I admit we did stop at TJ Maxx, a compromise because I really wanted to go to a good Pittsburgh mall, and hubby was outraged. And I admit that I have that tendency to really want to run if I can do so at all. But in this case I had never been to the "new" TJ Maxx, despite the fact that the new strip mall was not so new anymore and I thought it was a good time to remedy that situation.  Plus I wanted the observation I made to a friend of mine when I burst out in frustration one day, "I don't do malls, I do CONTINENTS!" to no longer be true.  So I did have my reasons for going....

Back to the nasty red thing.  It was also now starting to hurt and my fingers wanted to scratch it, touch it like your tongue touches a sore tooth.

I looked over my supplies and saw "The Green Balm" among my (newest) goodies, ordered from "Cult Beauty" in England. I bought it because it WAS from "Cult Beauty," after all - a new discovery for me.  They really do carry only cult items, not full lines of any brand, but the items "everyone," professionals and the peons like me, are wild about.  Each product they carry is there because it really works.  What a fantastic idea!  This balm (I'd ordered an assortment because of a free international shipping promotion combined with a discount, courtesy of Ruth, the model, whose blog I love to follow) looked promising.  No "bad" stuff in the balm at all. All so very green and gentle that you can even dilute it in water and gargle with it, according to one source, though somehow I don't think I'll be trying that too soon.  

I gingerly patted a bit on my neck and decolletage and it felt heavenly.  A couple of hours later I noticed the area had really calmed down.  Hubby was duly impressed.  By the next morning, it started to look like I had simply had a bit of too much sun, skin turning almost into a tan.  I knew that with luck I would not be getting the bumps or discoloration which these sorts of rashes can cause, not even the tiny scabs that can occur.

The red angry rash, or whatever the heck it was, was practically gone - well, in some lights. The places I touched as I reapplied The Green Balm turned redder again, not happy about being touched but within ten seconds the area was back to the barely visible redness before touching.  My skin was also sooo soft.  

So this is the story of MY adventures with skin problems with this DD.  I have more I'd like to touch on in further posts. I'm trying out another product that looks promising in the oils area as well as those BB creams I mentioned last month.  

I do hope that this has helped some of you (possible) readers out there, at least to know that you're not alone.  It's a crazy illness which no one really understands.  

I also hope that there may have been seeds of thought cast out there for you to consider.  If and when you happen to run into these skin problems, my adventures may shed some light as to how you choose to treat them.  

And if nothing else, I hope you've had a few chuckles to make your day that much more happy/bearable.  I really do believe in the power of humor and laughter, right there after the prayers and positive thoughts we send out and receive.

Sunday, March 25, 2012

Spring and the CFIDS "on/off" Phenomenon...

Our baby weeping cherry tree made it through the non-winter.

It's spring and that alone puts me into the best of moods.  My legs are killing me and I am thrilled about it!  Why?  Well, this past week I made myself run out (metaphorically speaking, of course - I actually practically crawled down the stairs) to take a few pictures with my iPod of the bulbs coming up.  Oh what freedom!!!  I've not been out of the house for weeks - months even, canceling doctors' appointments right and left - and then worried I'll be dropped by my doctors for being so "irresponsible and/or for wreaking havoc on their schedules.

It had to have been funny for any neighbors looking out and seeing me getting down on the ground for some close shots, in something looking suspiciously close to a nightgown.   Actually, it must have been interesting to see me at all. I am the "phantom neighbor," sort of like during my kids' high school years, by which time this horrid illness had become so severe that I became the "phantom mom."  There were rumors that I existed but no one was REALLY sure.

Anyway, the next day after my "photography" adventure, I happened to glance out the window (I should try to do that more often) and noticed that the trees were in bloom and hoped against hope I'd be able to "run out" again for ten minutes within the next day or so, before all the blossoms disappeared.  Three days later, I was ever so pleased with myself because I was able to do so and even stick to my strict limit of ten minutes and no more.

And wouldn't you know it, but just as I laid down on the ground, hubby dearest arrived home - in the middle of the day, for just long enough to cut the grass and run back to work. This NEVER happens!  I was, simply put, BUSTED!   Fortunately, my red face made hubby refrain from lecturing, though since then every once in a while he mutters "ten minutes, huh?" -  just loud enough for me to hear.

My family laughs that my life is either "off" or "on," with no in between and I'm beginning to see that they are right.   "On" means going on for hours, though it rarely happens anymore.   But there are at least two reasons for this "on/off" phenomenon.

First, it is really hard to change gears with this DD, CFIDS, CFS, ME and/or fibromyalgia with all its complications including migraines, SEVERE insomnia, nausea, eye vision problems, falling down, ulcers in the mouth which often make it impossible to even swallow water, speech impairment, memory loss that is more like amnesia than just bad memory, swollen lumpy nodes.  When you are finally well enough - angels singing Hallelujah! - to take a bath you then stay in way too long and pay for that for the next few weeks - if you're lucky.  When you're lucky enough to start to wash your face you start with soap, then a cleanser, then an exfoliant, then throw in a facial mask treatment for good measure and keep going because who knows when you'll be able to wash your face again?  You start a book and just can't put it down - because you can't change gears and because tomorrow you won't remember anything read the day before.  You play a mind game and force yourself to dust and declutter your nightstand and soon you're dusting everything in sight.  Your adrenaline has kicked in to assist the painkillers and if they happen to FINALLY work and vertigo doesn't start in, nausea, along with a dozen other possibilities, you become unstoppable.

Your cautious, "know-it-all" mind tells you to stop because IT knows perfectly well the price that will be paid, but your brain is damaged and can't turn off. If someone interrupts,something weird happens to your head, your blood sugar, your momentum and you are startled so badly that a migraine starts. The crazy list goes on and on, of examples and consequences.

Secondly, I've learned that pacing myself simply doesn't work - for me, that is.   Everyone is different.  It really doesn't matter if I spend five minutes doing something or five hours doing something - the end result is the same - and that is, that you'll always be in worse shape the next day or the third day after, for however long the fates have slated, I suppose.  That is why I so often go "all out" if I can manage to drag my body out of bed. And as long as I'm not standing still (because my BP plummets even lower and very quickly) but moving or sitting down on a stool I keep inching along - I become the Tasmanian devil.

I rarely disclose any of this because...drum roll, please...I am sick and tired of the "advice" I get from people who really have no clue, including doctors, about how I need to learn to pace myself, or I must make an effort to push myself,or I must learn how to NOT push myself, etc.  I rarely hear what I need to hear, what pretty much all of us need to hear: listen to your body and LEARN FROM YOUR BODY what's best for you.

So, getting back to my capturing pictures of my garden, I did the mature thing and took 10 minutes worth, washed off and got back into bed.

But now I'm too exhausted and in too much fibro pain, shaking, fighting off a migraine, with blues that are felt down to my very ankles from the awfulness I feel, unable to understand the simple concept of even how to wash my hands with Dove, much less wash my face. There are other symptoms which I'm not really registering, being so good about denial.  Pain killers are no help.  This is disheartening because washing my face at least once a day is one of my New Year's resolutions and I'm doing the best I've done in at least 15 years.  I'm ticked off that I didn't work out there until I dropped.   At least something would gotten accomplished - more than neighbors seeing the mystery woman ambulances appear for every once in a while. (LOL!??)

However, now my thighs are killing me too and I'm LOVING that!  This is the thing to have happened to me in ages:  the wonderful hurt a normal person gets after a period of slacking off and then doing a good work-out. It hurts but it's the "good" kind of hurt that I remember from 37 years ago, which so rarely happens anymore.  And who knows...I might even be able to add riding on my exercise bike for two minutes every few days soon.  I've still not given up my dream of going back to taking very elementary horseback riding lessons, though I fear I've jinxed myself by revealing that dream here. (And yes, of course I've knocked on wood and done the "Tphoo! Tphoo! Tphoo!" bit. I'm a supertitious Russian/Ukie by blood after all!)   But I am definitely going to TRY to keep up my attempt to record my garden's progression.   We all do so much better when pretty things surround us and we all feel much better when we see that we've actually achieved or accomplished something, be we sick OR healthy.  I know, clichés, but true and very well worth keeping in mind.

Happy Spring, everyone,
Upa (aka "Ира")