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: Medicine 21st Century Style

The Offensive

It's been an awfully odd week. I finally felt well enough to go and see my GP.  It was a long appointment as we made plans as to how to attack a "new" problem I'm having.  This is the latest development in what I call the "something new is majorly wrong with me" problem that I've been concerned about for about two years now. We've been distracted from this hunt because of a few red herrings that got in the way, among them the compartment syndrome surgery, pneumonia, gallbladder surgery and abnormal mammogram.  We talked and planned as if it were all a military operation, deciding which specialists I need to see.  Before, it's been, "see this specialist to put out this fire, another one to put out another fire."  However, we all now realize that we need to actively go on the offensive.  Putting out fires is no longer acceptable.  Because of the military feel of strategic planning, as well as well as the red herrings, my mind thinks of this as "The Hunt For Red October."  It is just so much easier to give it a code name because "the figuring out what new majorly new huge problem is" is just a wee bit overly-worded.

Part of me is happy that we appear to now start planning by going on the offensive by making appointments. On the other hand, the realistic part of me is a bit anxious because I know that no matter how much I plan it all out, no matter how many appointments are made with doctors who have carved out times in their schedules to accommodate me (calling in favors) I will end up having to cancel some appointments - and that is not just embarrassing, but it also makes me feel like a second-class citizen.  For example, I'd made numerous appointments with my gastroenterologist and over the last two years I've had to cancel each of about five appointments at the last minute. I become so sick that were the house on fire, I wouldn't be able to allow anyone to haul me out of it.  The pain is just so bad that I can't allow anyone to be in the same room with me, much less touch me.   How does one ever explain this sort of pain, exhaustion, brain depletion, nerve sensitivity, and so forth that is the legacy of CFIDS/ME/CFS and/or fibromyalgia?

So, this is one huge problem. As optimistic as I am, the rational, practical voice in me says, "this I have GOT to see!" as in "how in the world am I going to be able to see all these doctors?" I need to see about five or six specialists at this point, PLUS get my breast biopsy.  Huh?  Really?  Seriously?  Good grief, I'm still recovering from the gallbladder surgery.

In the end, my GP, hubs and I did cover some of the realities of being ill in the 21st century.

• We lamented the fact that one can no longer be admitted to the hospital and have all the consultants come to see you. We remember the days when all tests could be run during your hospitalization, all in one big fell swoop.  Back in the day, the consultants would run into each other in the hospital cafeteria, the X-ray room, or corridors if they couldn't manage a brainstorming session. What now takes months and months to accomplish could take a week or less if it were done with a hospitalization.
• We lamented the fact that acute health problems like saving the life of a shooting victim or a liver transplant is done so well, but chronic medical problems are woefully badly done.  Everything is so wrong!  I had great care when I had my compartment surgery but because of my CFIDS/ME/CFS, fibromyalgia, insomnia, migraines, I could not make it to the hand therapy I needed, once released from the hospital.  The plastic surgeon could not understand that if he wanted me to have several months worth of tri-weekly sessions, they needed to be done at my home.  I couldn't begin to explain to him that even if someone came to the house I might not be able to handle talking to a hand therapist, much less have him touch me!   Forget the fact that all my organs had fluid around them (anasarka) and the urine in my bag was brown because the tissue from all my organs were breaking down (rhabdomyolysis).  Forget that I needed two blood transfusions to stay alive.  Forget that I had renal failure and pancreatitis. They STILL wanted me in the office and felt I was being difficult and non-compliant in regards to hand therapy.  (Note: I was released from the hospital too early and THAT'S why I ended up with the almost fatal conditions, rushed to another hospital less than 24 hours after coming home... in what world is THAT cost-effective?)

Yet when we said we'd pay privately for any hand therapy at home, the surgeon's office said that at-home therapy was "not in accordance with our business plans."  (Oh boy! Hubs still sees red every time he thinks about the hypocrisy and rigid thinking.)  Twelves months on, I have severe nerve damage and the inflammation in my hand is often not helped by anti-inflammatories. Oh those spoiled prima donna plastic surgeons.  You didn't see Dr. Hunk General Surgeon acting this way with my gallbladder.

• And finally: we think we have a large chunk of the falling problem solved.  Perhaps you recall that I'd spent quite a bit of time passing out and crawling about, not being able to walk even the six feet between the bathroom and my bed without hubby's help.  It turns out that the muscle relaxer I need was changed to the generic and THAT was a great deal of the problem.  The scary part was also how LONG it took to clear the generic muscle relaxer out of my system.  I'm back to my name brand muscle relaxer and after six weeks, the falls are almost gone.   I do have trouble walking around but much of that is due to the gallbladder surgery and whatever this new "Hunt for Red October" is about.

The day after seeing my GP was more difficult than I've had to undergo in ages.  I see that after going to see my GP a couple of years ago and describing that I'd developed a new pain, he thought that my pain was just like any other.  Because of the stress of the visit (and the side visit to the mall for new glasses) I ended up in the ER with the surprise diagnosis of gallstones less than 48 hours later.  After seeing my surgeon on election day, plus taking the time to vote and run up to TJMaxx, I ended up so sick that I was in the ER just two days later.  After this latest visit to my GP, within 24 hours I ended up calling hubs at work and having a melt-down because the pain was so bad, but I couldn't endure even the thought of another ER visit, knowing how I would be treated for an "invisible illness." 

So, I want to know, how, exactly, will I survive all these visits to specialists without being killed in the long run?  I wouldn't think that under the circumstances, a hospitalization would be stretching it.  But alas, the hospitalization for a good workup in order to get everyone on the same page and to establish what is going on has gone the way of the doctor's house call.  I think a large part of the population out there with "invisible" illnesses knows exactly what I mean. Yes?  Comments welcome, as always.

And that's it for the week.  I hope everyone has a truly great weekend, feeling their very best, only better. Ciao and paka! 

Malaysia and CFIDS Travel (with 3 beauty tips)

Looking outside my balcony.

What people - friends, family, doctors - don't seem to realize is just how ill we with CFIDS/ME/fibro truly are, and with me, at least, it IS my fault to a certain degree. I don't know about others, but part of it is that I just can't seem to be able to allow anyone to see me at my worst. I just have this strange thing about people seeing me when I'm so ill and looking like death warmed over. In a hotel, for example, I won't even allow housekeeping to come in to change the sheets and towels on my bad days and I am a fanatic about sheets and towels - ask any one of my college roommates!

Not surprisingly, the hallmark of this dreaded disease, post-exertional malaise, has hit me hard, really and truly stepping in, full blast, three days after arriving. The ulcers in my mouth were out in full force even on the first planes and by the time we were in flight from Tokyo to Singapore, it was almost impossible to even swallow water. (Hopefully, I'll soon address this CFIDS/ME/fibro problem in a post.) Now my muscles are aching to the point where I don't even know how to describe the pain. My eyes are burning, red and raw just because...because they ARE! My lips are blue turning to white, and just the thought of moving from the bed to the balcony or bathroom makes me want to cry.

You who have CFIDS/ME/fibro know exactly what I mean. It's not crying like a baby or spoiled brat, nor even the tears of anger or anguish. It's involuntary tears flowing because you know that there is much that needs to be done, though you try to tell yourself that constantly thinking about it will only make things worse and desperately try to convince yourself that somehow things WILL get done. The only chance you really have of recovering from "overdoing it," in order to "overdo" it yet again, to function enough to participate in a huge/important function, is to let go of thoughts of things that need to be done and mellow out. Yet this is almost an impossibility because so many of us are Type-A personalities. And so, Fibro-brain, the partner to pain, excruciating fatigue and all the rest, definitely slips in - in my/this case, the day I started this trip - and like a little terrior won't let go.

I'm in bed, but am I resting? Of course not! In the back of my mind there is a never-ending computer going on saying, "if you do this, you won't be able to do that!" every step of my day and night, constantly recalculating. It's not obsessing, I hasten to add. It is a complete necessity if I'm to survive - but it certainly is tiring.

On the bright side, I hope that I have my fall over and done with. You see, ever-observant hubby has always said, "you've fallen in all the great cities of Europe!" as described in the noted post. Now he can say, "you've fallen in almost every continent!", as described in an earlier post.

Yesterday was devoted to shopping for a dress for me as mother-of-the-groom. Given that my Viking blood coexists with my Mongol blood, it was quite the hunt. I'm almost 5'8" and ugh! - I've gained at least 10 pounds since I left home. Somehow I always think food will cure whatever ails me, and I've been, let's say, doing a lot of curing! Thank heavens I brought quite the selection of shoes with me since I doubt that even Asian drag queens would have feet as quite as large as mine.

But back to the fall. Yes, "the fall" with a deepening of the voice as you say it (Ha!): "The Fall." My son and his bride-to-be were trying to meet up via their cell phones in the mall and so I decided to sit down on a bench. Kaboom! I went crashing onto the floor, somehow miscalculating how long the bench was. My son was so shocked that he just kept talking, offering no help, as if he were watching this on TV instead of in person.

So, add yesterday's intense going out experience to my not having rested enough from the whole getting-here-fiasco with cancelled flights, etc., and I'm just dead.

I sit in my hotel room and am sooo mad at this stupid illness. I want to go see places. I'm in Asia, for heaven's sake, a continent I never expected to visit. With Malaysia I'm in a beautiful corner of the world and there are so many sights to see. Particularly I enjoy seeing how hard this country is working to turn itself from a developing country to a country that wants to be counted in the world.

There are such beautiful sights. Last night I was able to take pictures of a bridge I can see from my balcony. It changes colors every few seconds from red to blue, purple, green, aquamarine. Each district, as you drive through, has its own unique lamppost so the driver always knows which district he's in. What a cool touch!

I know that what always happens will happen here too. Even though I've been to Australia three times, I saw almost nothing. Here too, this will happen.

Don't get me wrong. I am so thrilled to be here. And it allows me to breath easier knowing where my son is, although he works four hours from Kuala Lumpur. Still, I'll have some sort of idea, some frame of reference. Better yet, I'll be able to meet some of his students and colleagues at the wedding. I'll now know who is who when he writes to me to tell me of a funny incident or whatever...I'll now be able to put a face to the name.

And to complete the happiness, hubby was able to reschedule his work so that he could fly here for the wedding, and spend a couple of nights here before heading back!!! Consider me jumping for joy in my mind, though I must admit that when I DID see hubby coming out of the security area into the lobby, I found myself jumping for joy. This is just too big an event to not have the father of my child standing beside me.

At any rate, I just have to figure out how I can trick my body into believing it's up for a wedding. But not to disappoint, I am including a bit of beauty tips:

• I put on the Omorovicza illuminating moisturizer (no tint) the other day and liked it well enough, but wasn't IN love, though I'll continue to play around with it. I'm seriously considering getting the Laura Mercier illuminated tinted moisturizer. I hadn't realized that there were now two LM tinted moisturizers, the normal one and now the illuminating one. The regular one, which came out ages ago, just did not suit but I think my skin is in better shape now than it was, say 10 years ago, so I'm rethinking the tinted moisturizers since it IS summer. (Granted, because this DD has made it hard for me to make any decision, I might not make a move on that until NEXT summer!)
• I used my Dr. Jart+ BB cream and loved it. We weren't out in the sun - like an MS patient, my body simply cannot tolerate the heat and sun exposure - but the BB cream went on very nicely and didn't feel heavy, yet evened out my skin tone. And, of course, I'm madly in love with the SPF of 50! The color blended in very nicely.
• I'm in love with my new Clinique Cream Shaper for eyes. I tightline the brown I use, and it's a more subtle look which makes your eyes pop. For an idea on how this can be accomplished, my pinterest board shows a picture of how it's done here .

I hope everyone out there is doing as best as can be, only better! Till next time!

Vanity/pride, beauty tip, boots and price paid.

"Vanity and pride are different things, though the words are often used synonymously.  A person may be proud without being vain.  Pride relates more to our opinions of ourselves; vanity, to what we would have others think of us."
      -Jane Austen

The day before yesterday, I had a visit with my GP, and since I was in no shape to go anywhere, you can only imagine what I looked like when I came home.

I took some ribbing at the office too....  You see, last time I was there, I caused a bit of a stir with the female staff with my great looking new high-heeled boots - bought last year but first time to be worn.  And I think the makeup may have helped a bit too, one of my better efforts, thanks to a WHOLE bunch of new products.  Quite a few of the female staff stopped by the exam room just to see the boots (and the face, too!)

Hmmm....I seem to be getting a reputation for boots, which I'm just loving, I must admit!  Wearing another pair of boots to the plastic surgeon's office, I got quite a few compliments for my boots there too, this pair flat-heeled. The staff, as well as fellow elevator riders at the "major medical center" where I spent so much time last year, would also often comment on my boots.  Going back in time, I was walking through Saks one day a couple of years ago and a very elegant-looking buyer (as in buyer FOR the store) stopped me as we were passing each other, held me by my shoulders, looked me up and down and said, approvingly, "yes...very nicely done.  The proportions are just right.  Love what you've done with the colors.  Especially love the boots!" and went on her way.  This, despite the fact that the boots I had on were bought back in 1998.  I guess Ferragamo's are just THAT classic.  (And I supposed I should have been taken aback and upset by the handling of my bod, but no, other than stunned, I was a bit thrilled...it WAS Saks Fifth Avenue for heaven's sake, and the buyers don't normally make a point of stopping their shoppers - certainly me - to make these sorts of comments.  I prefer not to wonder if she wasn't a loon that day just pretending to be a real Saks employee!)

So imagine how much I felt as if I needed to eat CROW when just twelve days after appearing in my GP's office for a "normal visit," I needed to reappear in said office, because of those boots!  Oh woman...thy name is vanity, to paraphrase a wise bard.

You see, because I was in a hurry for the last appointment - a THREE-hour ordeal because I was determined that despite how I felt, I was going to look good - and I skipped the putting on of any sort of socks, peds or hose. I just slipped those suckers on and I suppose my already compromised CFIDS/ME/Fibro immune system just couldn't fight the chemicals of whatever was on the inside of the boot leather, plus the pressure of those toes squished/rammed into said boot leather.  Honestly, my feet were designed to be bare-footed at all times!  We (I) put up a difficult, complicated and valiant 10-day battle with antibiotics (documented, in my panic, on my iphone as to the progress of the infection - very gross, sorry!) but it was all for naught.  I needed to have it lanced/sliced.

And before you think how crazy I must been for going bare-footed in my boots, in my defense, I openly admit that my brain was NOT working on all cylinders that day (even for me) and it took every mind game I could muster to simply make it to the visit at all.  I remember thinking my Uggs are not supposed to be worn with socks; they are also made for comfort and my boots were definitely NOT designed for either, they just looked fantastic and I'm all for suffering for beauty if I'm at all able - it's a generational thing, perhaps even a Southern generational thing?

To make things worse, turncoat hubby entertained ever-amused GP with the exploits of my shoe, sandals and boot adventures, starting with a recitation of that infamous first date - blind date! - when I got thirteen blisters and super-duper swollen feet from my brand new high-heeled sandals, from walking all over the Village in NYC on a very hot and long August day, evening and night, described in a bit more detail here on March 11.  When scalpel-wielding GP made a few jokes at my expense, I do believe I did not say a word - how could I when he had the darn scalpel in his hand?  Protective instincts kicked in when mouth started to say something smart...until scalpel was very far away.

So, what's this beauty tip, my great discovery that I alluded to in the title of this post?

It's all because of how cruddy I felt as a result of my doctor's visit.  I've been meaning to write a review where I could incorporate Laura Geller's "lip strip" (a full 1-ounce jar, Lord have mercy!). I really don't want to go too negative in any reviews, perhaps to even ignore the unsuccessful products if at all possible with my conscience, but I've had this product for two or three years and on and off I've tried to find a way that this product would work for me. With dry mouth (yes - you understand, you fellow CFIDS/ME/Fibro people - you know exactly what I'm talking about, right??) I was determined that this product would work, come heck or high water.

Well, a few weeks ago, I finally declared (to I-really-don't-want-to-know hubby) that this product was the biggest waste of money ever, and I've had some real whoppers in the past. This "lip strip" just really got to me for some reason. I guess because there was no color that could be off, no face condition that could alter its properties, it just burned me up.  It was a simple straight-forward product and it could not accomplish its designated task no matter what.  Worse yet, too often it tore my lips to bleeding, in many places at once. If I had a hall of shame, I would declare this product the winner.  

HOWEVER!!!!  After I got home from the doctor's, I took off the pitiful makeup job I'd half-heartedly attempted, which I'd bothered with only because of a sense of responsibility to this blog (see how devoted and dedicated I am????  LOL!).  I took off the awful makeup job with my miscellar water.  Vichy had left patches of dry skin on the drier areas of my face (I have combination skin) on a few tests go's, so I was onto La Roche-Posay and it was splendid, though at this point my heart is divided between the La Roche-Posay and the Bioderma.  I, in my brain-dead la-la world, found myself using the cotton pad on my lips too. This had disaster written all over it and I panicked as to how much dumber I could get.  Sigh.

Shocker!  I found that the La Roche-Posay miscellar water and cotton pad actually took the gross dead skin off my lips quite nicely, a feat which nothing had helped in the last couple of weeks, including the brushing-my-lips-gently-with-a-toothbrush trick I use quite frequently.  I used the miscellar water-treated cotton pad quite gently and lightly wet the area (not too wet!) and soothed it on gingerly, prying off the dead skin not with my finger but with the cotton pad.  My lips were a tiny bit sore 24 hours later, a bit on the reddish side, as if I had put some sort of lip venom on.  I must admit this is/was a nice change from my usual bloodless, white or blue lips and not really uncomfortable.  Best of all, no "cuts," or blood from the inadvertent "exfoliation." 

Ah, I just thought to slather on some of my La Mer balm, little pots of which I have stashed all around, but not used regularly enough.  And yes, La Mer's lip balm is the only thing that ever comes close to helping - it's really quite miraculous. I have no idea why I have other balms, etc., cluttering my cabinets.  I know I'll never use them.  They were awful when they came in, so do I honestly think their properties will change while sitting in my cupboards?

So, something to try for those of you who have (major) trouble with chapped lips, chapped lips which belong in a category of their own, who find no help with any lip balms, lip strippers, whatever.  I am really excited and hope this trick with the miscellar water helps me in the future.

And I'm debating whether I was vain or just full of pride when I wore my new boots, hence the Jane Austen quote. But no, I have not given up on my boots.  They were certainly not responsible for my idiotic ways!

Crying from my sickbed about another senseless CFIDS death....

Today I'm mourning the death of yet another victim of this monstrous and all too often fatal "syndrome" which too many doctors, health professionals and even friends and family are simply ignoring and/or, perhaps worse, refusing to believe in.  I did not intend to make this blog a place for downright preaching, perhaps because it turns so many people off of a topic that is often way too hard to stomach, and most definitely hard to understand and believe.  Today I'm crying because I've just learned about the death of a young woman whom I never knew, never even knew she existed, but have since learned how much she was able to accomplish in her short and tortured life: and make no mistake, she, as well as well as thousands, some suspect millions, are living a life of torture, for that IS what CFIDS/CFS/ME/Fibro is, "TORTURE." And yet she managed to somehow accomplish so very much in her short life, volunteering from her sickbed for the youth who have this illness as well as writing a guide to this illness for sufferers, a book which was well-received.  

After crying earlier in the day, I got angry.  I'm angry that this illness is still marginalized and I'm angry that funding is barely available for research and that the allocated funds in the past have also been "misdirected" to other places and mired in scandal.  It is disgusting.  Period.  Criminal.  Period.  Immoral.  Period.  Tragic.

Emily's family asked that the last letter she typed into her smartphone over a period of weeks when she still had strength be posted by anyone who cares about this illness.  Her words are so eloquent that I am proud to be able to place them here on my blog.  I am sorry for those of you who are uncomfortable with the "dirty" part of this illness, but this is one day that simply cannot be left to laughter.  

For those who would like to learn more about this brilliant young woman, the link I have here should give you more information:  
http://www.meassociation.org.uk/?p=10880

And now for Emily's so eloquent appeal:

"My name is Emily. I developed the neurological condition Myalgic Encephalomyelitis (ME) when I was 6 years old. In April 2011 I turned 30. I still have ME. 

ME coloured every aspect of my childhood; it painfully restricted my teens and it completely destroyed my twenties. Now, as I move into the next decade of my life, I am more crippled than ever by this horrific disease. 

My doctors tell me that I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now - it's like that every single day. After all these years I still struggle to understand how it's possible to feel so ill so relentlessly. 

My reaction to small exertions and sensory stimulation is extreme. Voices wafting up from downstairs, a brief doctor's visit, a little light, all can leave me with surging pain, on the verge of vomiting, struggling with each breath and feeling I'll go mad with the suffering. Of course it can also be as bad as this for no particular reason - and often is. I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music - the list is long. ME has made my body an agonising prison. 

My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube. My life could be better if I had a Hickman line (line which goes into a major vein and sits in the heart) for IV drugs and fluids, but such a thing would likely kill me. I'm on a huge cocktail of strong medications which help, yet still most days the suffering is incomprehensible. During the worst hours I may go without the extra morphine I need as I feel so ill that the thought of my mother coming near to administer it is intolerable - this despite pain levels so high that I hallucinate. 

I live in constant fear of a crisis driving me into hospital; our hospitals have shown such lack of consideration for the special needs of patients like me that time spent in hospital is torture (eased only by the incredible kindness shown by some nurses and doctors) and invariably causes further deterioration. 

Many days I feel utter despair. 

But, unlike some sufferers, over the long years in which I've had severe ME (the illness began mildly and has taken a progressive course) I have at least had periods of respite from the absolute worst of it. During those periods I was still very ill, but it was possible to enjoy something of life. So in these dark days I know there is a real chance of better times ahead and that keeps me going. 

My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. This is wrong. As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me - severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for - but I don't. This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change. 

And that is why I tell my story; why I fight my painfully debilitated body to type this out on a smartphone one difficult sentence at a time and to make my appeal to governments, funders, medical experts and others: 

Please put an end to the abandonment of people with severe ME and give us all real reason to hope." 

How many more deaths will it take before something is done about this "syndrome?" Too many have already died and yet it continues... Царство тебе небесное...may you rest in peace, Emily.  (1981-2012)

Answers Found in the Oddest Ways

The Original Clarence

Just after Thanksgiving, I had a freak accident which resulted in two surgeries for acute compartment syndrome and me almost losing my arm and hand, and indeed my life.  I'm still not completely sure what happened - though I DO know that it had to do with complications due to the CFIDS/ME/CFS and fibromyalgia - since  hubby and my daughter have found it almost impossible to discuss, much less fill in the blanks.

The first memory I have of the whole incident is well into the second week of December, though I'm told I wouldn't stop talking, and evidently spent a lot of time speaking in French, of all things - a language I don't even know, other than the tiny bit recalled from high school, eons ago - and when I still had a functioning brain.  Even back then I was not the most talented in my attempts at the language.

Over the last few years, I've often thought that my guardian angel needs a name, especially after so many near-misses with me, but this incident took the cake.  So he's now called "Clarence," the name of the angel-in-training in "It's a Wonderful Life."  Coincidence?  I'm not sure, but "Clarence" it is. This near-death experience included near-kidney failure, fluid around all of my organs, near pancreatitis (jury's still out on that one) and a 50-lb weight gain within just a few days from the massive fast-flowing IV's and numerous other complications of which I'm blissfully unaware. I ended up looking remarkedly like the Pillsbury Doughboy and moving about as successfully as the poor tyke.  Luckily things started to turn around once they gave me a couple of blood transfusions, something I really didn't particularly want since I had a near-death experience with that back in '79. But there was no choice, really. The timing was right for oh so many things, a sort of "perfect storm."

I'd had the flu since before the darn accident and though I normally run a fever a couple of times a day, this was way beyond even MY norm. At one point, out of desperation, I started squirting water on my face. Yes, I know there are those who make fun of paying good money for water-in-a-can but pouring water in a plastic bottle with no aerosol accomplishes nothing and since I really have so little carbon foot printing, I figured, I'm due a few points.

I had a few days when my eyes burned a lot and suddenly I realized it had been ages since my eyes were even mildly dry.  I couldn't figure out the reason, but I was happy since no amount of eye drops have ever helped.  My (old) eye doctor could never understand it and kept giving me tips, none of which worked, frustrating all.   I became almost an obsession, each doctor getting hung up on this tiny piece of minutiae in the grand scheme of things. I actually thought about trying the eye drops advertised on TV, usually during the evening news, but thought that the woman had really weird eyes...no thank you, I have enough problems.

But today I saw another person on that commercial and backed up my TV to hear her spiel. Well, actually I wanted to see how crazy HER eyes looked.  I'd hoped they'd tweaked the formula.  As I listened to the woman doctor talking, I heard a word which went "Ping!" in my brain.  She talked about the inflammatory process of the eye and why the eyes can become so dry.

BINGO!  I'd been describing my eyes as hard as marbles, which no amount of drops could penetrate. Well, that's what this product is, an anti-inflammatory going right to the spot.

I've been on an anti-inflammatory since my compartment syndrome surgeries. And all this time I've been forcing myself to drink a good amount of water, down from the usual gallon or more a day I normally crave, which drives hubby up the proverbial wall, with him "threatening" to set up a faucet above my bed. 
What kind of CFIDS'er and Fibro was I?  We all seem to walk around carrying water.  In the beginning, CFIDS and Fibro docs caught on quickly that those patients holding onto their water bottles for dear life were the ones who had CFIDS and/or fibro. They knew our diagnoses before even talking to us as they noticed our red eyes (from dryness), along with chapped lips, and the inside of our mouths sticking to our teeth, making any discussion that much harder.

In other words, my eyes were inflamed to the point where no amount of drops put into them could penetrate and do any good. The same with the dry mouth - so inflamed that the thirst was never quenched.  Now with the anti-inflammatory, it appears that the moisture is getting through. The red eyes seem to be disappearing. Lip balm is actually working. 

Yee-ha!  So, one puzzle out of how many hundreds has been answered?  Clarence, you old rascal, you did GOOD! ;)  Bring on that mascara!