Friday Tidbits: Three Medical Quirks

Experiencing motion sickness but already suffering migraines...

It's Friday Tidbits time, the day of the week when I can make a few points without needing transitions between topics.  OK: I know that this differs very little from my usual way of writing, but I do like just a few teeny-tiny delusions in my life.  We'll pretend that I always have beautiful transitions.  Fine: end of ramble and on with the subjects at hand.  

I have three medical quirks you might not have noticed before which I found fascinating.  These I bring to you from what I've learned from my rheumy/immunologist over the years.  I'm not sure what we can actually DO with them, but hey!  That's our lives (those with CFIDS/ME/CFS and/or fibromyalgia) on any day with anything, so why start making too much sense now?

And so, on with: Did you know that...

• You can get reptilian/lizard-like skin from fever and swelling?   Ha!  This is a good observation and tidbit, no?  (Yes!) When I got the cellulitis in my hands and left foot, my hands swelled up enormously, with extremely tight skin and tremendous hotness and redness to them.  After the high dosage of antibiotics finally kicked in, the swelling, redness and hotness started to come down, but my hands had a very strange texture to them.  I kept looking at my hands and thinking, "what the heck is going on here?"  (You DO realize that you're getting the cleaned up version of what actually went through said mind?)  My hands didn't look chapped, they didn't get a rash and they weren't dehydrated either.  They just looked sort of scaly, almost reptilian or lizard-like.  (This "reptilian/lizard-like" description is uniquely mine, I believe, not found in medical journals, though there is no doubt about the phenomenon.)

I discovered that a good description of what happened is "local inflammation that creates a glove of dead skin."  The top layer of skin dies and then flakes off.  When the top layer of your skin is no longer alive, but hasn't yet flaked off, it gets rough.  Oh my, "rough"?   Well, that's just putting it mildly.  But, now, a few weeks later, my hands have a wonderfully soft texture!  Think about it: I underwent a natural exfoliation process!  It's not the IDEAL way of going about doing one, but the end result WAS gorgeous. (I'm TRYING to be positive here, y'all!)

• That itchiness can be associated with a viral illness such as the flu?  No one knows why this happens.  It's called "pruritis," which is just a fancy word for "itching."  There's a spectrum to pruritis as there's a spectrum in almost everything.  Some cases are simply due to dry skin but others have more serious causes.  It's not an allergy.  It's just a non-specific reaction that may be due to a toxin or a virus, but again, no one is exactly sure why this happens.  (Oh, we can talk unmyelinated C-fibers, nociceptors, histamines and all sorts of medical theories till we're blue in the face but it all boils down to "No one really knows, folks!" and  besides, they are not the point.)   

The itching can be as benign as seen with dry skin or even pregnancy.  However, it can also be a sign of serious illnesses and/or conditions.  These include liver disease/liver failure, kidney failure or when other organs malfunction, such as the thyroid gland.  I have this symptom a lot and am happy to finally have an explanation for it since I always knew it wasn't simply due to dry skin nor imaginary.  (Remember: I have hypothyroidism but there's more than just one candidate for what causes this with my body.)   Furthermore, this is an itchiness that is definitely "invisible": it's not a rash or hives, just itchiness so bad that you want to get out of your skin.  So, next time you or I are in a hospital and complain of itchiness that's driving us nuts and the nurse gives us a disbelieving fish eye, we can be prepared!  I can tell you that when I've had this invisible itchiness, rashes and hives all at the same time, it was the invisible itchiness that was the worst - by far. 

• Children destined to become migraine sufferers have a warning of what is to come later in life by suffering motion sickness accompanied by vomiting.   I can vouch for that!  I'd give my camp counselors a desperate look and was immediately excused to get out of church QUICK: all it took was barfing a couple of times as a 5 year old and I was set for 13 summers!  This is the fate of the migraineur: he/she is sensitive to stimuli, be it to light, sounds and smells, a "state of being" for one who is extremely sensitive to these stimuli, even when without a "headache."  This certainly explains a lot of my childhood, though I had migraines even as a very young child.  (I know: I'm so wonderfully lucky, aren't I?  Excuse me as I keel over!)

And so there you have it.  A few little tidbits to mull over in your mind - or not, as you wish, though I'd rather hope something here is of use.  In any event, I wish all of you a wonderful weekend, with you feeling your very best, only better.  Ciao and paka! 

Sleep Matters

I must say that these last couple of weeks have been the strangest I've had in quite some time. Anyone who's even a rare visitor to this blog can't help but realize that I have serious sleep issues.  For example, we're talking about regularly not sleeping for days and nights on end. After a couple of days of unrelenting "awakedness," my family walks around saying, "mom's due for a 'marathon' sleep!" - as everyone holds fingers crossed.

The "marathon sleeps" are wonderful, absolute bliss, almost heaven.  They can last up to 24 hours and one year I had a most unusual one.  Exhausted from all the holiday goings-on, I fell asleep on Christmas Day and slept right through to New Year's Eve.  I only woke up occasionally to mozy on off to the bathroom, gulp down a glass or two of water and literally pass right out again - in bed, of course.  Yep.  This was quite unusual. Typically, a marathon sleep is at least 12 hours, I would guess, and can go on up to 24+ hours.  However, the problem is that the marathon sleeps never ever come close to making up for the time I've lost due to the insomnia. So, that's the setup.

I've been battling the flu, on and off, for at least six months, perhaps longer.  Yep.  My funky immune system just can't seem to get its act together and no matter how much prodding I do, insulting, or even encouraging, my immune system simply doesn't seem to want to listen to me. And, to be fair, I don't want to listen to IT.  I suppose you could say that we're "frenemies." I have reason to be mad at it, although I must point out that I most certainly have NO idea why it doesn't want to be friends with me.  But that's neither here nor there.  

Sleep = a better, stronger immune system.  One of the reasons that those of us with the dreaded CFIDS/ME/CFS and/or fibromyalgia have such a rough time of it ("rough," really? no stronger word can't be found?) is because insomnia rules.  If you don't sleep, your immune system doesn't function optimally.  Of course, there are a lot of other factors contributing to the whole immune system issue, but restful sleep is really key and perhaps prime.  That is, quality counts!

So, what is it that has made this such a "weird" last few weeks? 

My body has decided to attack me from a new direction.  Suddenly, I'm falling asleep right and left.  Then, beginning with last Thursday night or so, I started having an incredibly weird sleep pattern.  I was working at my PC and kept waking up, surprised, because I'd find my head on the keyboard, NUMEROUS times!  At one point I woke up with my head on said keyboard, glanced at the time and discovered that two hours had passed.  I'd be working on my iPad in bed and wake up with a start because the iPad had fallen onto the floor and the noise then woke me up.  Hubs has had a hard time hearing the TV the last few days as we were supposedly watching some of our favorite shows together, because I was, EVIDENTLY, snoring away loudly. (Evidently?  Yes, I swear, sometimes I think he makes this stuff up, just to get my goat!)  

What the heck has been happening to me?  If I'm not careful, I may very well end up having to relinquish the title which so many sleep specialists have bestowed upon me: that of one of the WORST insomniacs they've ever had the misfortune to come across.  Were I searching for titles, "one of the worst insomniacs ever" is not the one I would choose.

But I digress.

It seems that my body and brain have decided "enough is enough."  Body and brain seem to be disgusted that I can't seem to get down the concept of LOTS and LOTS of rest.  I keep postponing rest until a "good" time comes along - my gallbladder and the hypothyroidism pretty good examples.  And so they seem to be trying new battle plans to get the message through to me - that once I feel a little better, I need to continue to rest. Actually, it's much like the warning you get when a doctor puts you on a course of antibiotics: do not stop taking the antibiotic once you feel better but take the entire course.  I tend to take on a small project as soon as I feel better, absolutely convinced that I'll suddenly be healthy and wake up only to discover that the last 38 years have been a bad nightmare, having been lived in some parallel universe and that my health is, indeed, fine and dandy.  

At any rate, my body's newest attempt to combat all the assaults of the past year (not to mention all the assaults of the last few decades) is that it's finally making me sleep.  I'm not sure how long this will last - we all know that in mentioning it here, I've really and truly jinxed myself - but I am so enjoying all this overwhelming sleep at the moment, even if I AM more disoriented than usual, time and day-wise.

BTW: did you know that you can get all itchy from a virus?  I've been going through a bout of itchiness like I've never had before and the med I take to prevent hives/itchiness has not been able to stop the itches.  I may soon go mad!  On the other hand, what validation: to know that this is not "imagined," but is a real scientific fact.  I'll take whatever validation the medical community reluctantly doles out!

The most frustrating part of this flu at the moment is that I feel great-ish one day - or even one hour - only to feel myself suddenly sicker than even before, running a high fever, sweating, unrelenting pain.  The sweating persists even as the fever goes away, my body temperature returning to my normal 95.5-ish.  But that, the sweating that is, is a subject for another day.

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


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Friday Tidbits: Depressed/Not Depressed?

Yesterday in an email to my BFF I admitted that I thought I was depressed.  That's a huge admission for me since I put a lot of work into NOT being depressed.  

However, looking over some of the posts I've written lately, along with some research on the state of the flu "epidemic" we're experiencing, I suddenly realized that I wasn't depressed as much as I was just really sick. What I thought was just some sort of awful bug we've all been fighting, has most likely been the flu instead, the real McCoy.  In fact, it's probably been more than just one episode of the flu.

Well, it was the flu on top of the cellulitis, which would make sense, because who knows which came first, the cellulitis or the flu?  Regardless, whatever got into my system resulted because of an already weakened state, and that's on top of the already weakened state of the CFIDS/CFS/ME and fibro, plus my severe insomnia that's gone into stratospheric heights.  Am I making sense?  I know, you really do need a score card around here.

What started my "depression" is that I couldn't take the cellulitis (wow! that did a lot of damage!) on top of the hypothyroidism I was trying to get a handle on.  In the flu epidemic post I wrote last Friday (link) I alluded to the fact that we would basically have to put a halt to "The Hunt for Red October" until flu season was over. This is the plan I've dubbed as the hunt and mystery of the new-awful-mysterious-thing-that's-happened-to-me-that-we-need-to-find, but instead get red herrings thrown at us.  (Whew. Do you see why I need a code?) In other words, my plan to go on the offensive had been thwarted and it was just too much for the Pollyanna side of me.  (Hey! You think it's EASY to be positive???)

BUT!  Yes!  BUT!  And it's a good BUT! 

Yesterday's news gave me heart.  According to what I can piece together from various news sources it appears that:

• there is a good chance that the flu season has peaked in a few states.  Whew. That sounded wonderful.  Caution is being reported right and left, as it should be.  Furthermore, we still need to watch what we touch, where we go, all the things I mentioned in the flu post.  But this is wonderful news, the best I've heard in quite a while.
• there is a good chance that we only have six weeks of this junk ahead of us, which takes us to the end of February.  I liken this bit of news to labor.  What was so awful about labor?  It was that you didn't know when in the world that baby of yours would finally decide to enter the world and put you out of your misery.  Having what is a type of time frame is NOT to be underestimated!   I can handle six more weeks of vigilance and wait to resume "The Hunt for Red October."
• there have been three strains of the flu out there, not one.  NOW I understand that I may have had all three versions at one point or another.  Looking at the symptoms was reassuring.  I hadn't been fighting the same thing over and over again.  And no wonder the pain meds weren't working.  Once I have an explanation I can handle most things.  I'm just so glad that I take a daily anti-viral which my rheumy/immunologist recommended and GP prescribed and I've been a fanatic about taking the anti-viral for about the last five or so years.  How much worse could things have been?  MUCH, from what I've been told by said doctors.

As soon as my surgeon gives me the OK to return to whatever MY normal is, I can't wait to start sterilizing the house.  I have got to find the steamer and start in on washing those areas I'm exposed to, including the kitchen areas where germs and viruses may be lurking despite all attempts (on hubby's part) to eradicate.

Furthermore - and how I hope I'm not jinxing myself! - I've made another list for the weekend and hubs looks like he's gung-ho.  I certainly hope that nothing happens to HIM between now and then to make this plan go kaput.  I mean, I REALLY need to get something done in the house.  Accomplishing anything will put me in a better state of mind.

So, I see that I'm not depressed as much as sad and frustrated.  Or at least that's my story and I'm sticking to it!

And in the meanwhile, I hope everyone is feeling THEIR best, only better, and staying away from all those nasties out there.  Take care and take precautions.  Ciao and paka!

Six weeks?  Yeehaw!!!

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Friday Tidbits: Staying Safe from the Flu

Visions of people around the country wanting to be admitted to hospitals have haunted our newscasts in the last few days as "the flu" spreads at a maddening pace. There is footage of doctors, as well as patients, wearing face masks in ER's and the worst footage is perhaps MASH-type tents being set up outside at least one hospital I saw on TV. The flu season is in full swing on steroids, even though calendar-wise, flu season is just really beginning.  Those viruses out there have swept the country in unanticipated numbers, catching everyone off guard, it appears.  People who don't normally get flu shots, though they make sure that their children and elderly parents do, are running to get those flu shots now, hoping for the best.

What is the CFIDS/ME/CFS patient to do?  Most of us have compromised immune systems. I know I do.  Often it feels as if all anyone in my family needs to do is look at me crossed-eyed and I'll come down with everything but the Bubonic Plague, and there are days when I wouldn't be at all surprised if that happened to me as well, especially with my glowing record of health lately. (Yes, the cellulitis IS getting better but I can tell that this cruddy thing has wiped me out.)

I, personally, can't afford to get the flu shot.  I've had it more than once (idiot that I am, I'm always game, thinking surely I over-reacted last time!) with disastrous results.  So, what's a person with a compromised immune system to do short of living in a plastic bubble - often something I almost fear I'm getting perilously close to doing myself? (Joke?)

Here are some tips which I follow.  Some are a bit (?) unorthodox.  Some are obvious.  All will keep you as healthy as you can be, if you're able to "live" with them.  I happen to be of a "most" severely ill CFIDS/ME/CFS patient, so you yourself need to decide how far you have to go to get through the flu season as safely as possible.

1. Don't make appointments for anything but the most vital of doctor visits. I was supposed to see my endocrinologist the other day and he canceled with an emergency. I think that may have been a blessing in disguise.  Despite all the problems I'm now experiencing, I'm not sure I need to add flu to them, so when we reschedule, it'll probably be for mid-March or April 1st, our usual time, when all danger of my catching most bugs is past. (April 1st: don't you just love my sense of humor?  But it's the usual day my new doctor appointments normally begin!)
2. Don't go to the dentist until flu season is over!  My own dentist has more or less kept me to that "pact," not allowing me to schedule teeth cleaning, dental work that seems necessary but really can wait, despite my "I just can't take it anymore" attitude at weak moments.  He's seen and heard what happens to me during flu season (heck, even non-flu season is a risk) and won't allow me to be scheduled.  (Have I mentioned that I love the guy?)
3. This is NOT the time to be going to movies, and I say this despite my love of the Oscars and, that as I type this, The Film Critics Awards are on.  Talk about a breeding ground for germs and everything else under the sun!  I thought about trying a matinee but realized how really stupid that would be in my case.  So, nix the movies until this flu has been gotten under control, at the very least.
4. IF you have to go to see your doctor for anything that's earth-shattering, you may want to consider my very strange, but effective, strategy.  I've had enough of waiting rooms and getting ill.  So, hubs goes and sits in my place and I sit in the car with my Kindle and we wait separately.  When it's my turn he comes out to get me from the car, I come in through the back entrance, bypassing the dreaded waiting room and though I haven't had the nerve to Lycol my way in, it may come to that.  I'm still coming down with too many health problems after seeing my GP or any doctor for that matter.
5. Wear gloves if possible, in order to stay safe from door handles, and other places that lurk without you suspecting them.  Stop the shopping!  Do you realize how many people have touched those items in the store before you?
6. Do NOT allow your friends or family to use your cell phone. There's no need to get that close to anyone's phone any longer.
7. If need be, start a fashion trend of your own and wear a face mask if you're going to the mall, etc. (Not that you should be, but it's your health at stake.)  I've looked at footage of the Japanese in the past and thought, why in the world don't we wear face masks on the street, in malls, etc.?  I think this might be the year to start this movement here in the States.  (I know, I know.  It's never going to happen but a girl can dream!)
8. Do not shake hands with people and do not give real hugs to people!  My GP almost fell over when I wouldn't shake his hand when the swine flu was a real threat.  Then I found out he'd had a few cases and *I* almost fell over.  I wanted to escape as quickly as I could haul myself out of there!
9. Washing your hand with soap and water is best, I think, but since that's not always possible, carry hand sanitizer with you if you want/need to go out. The normal ones out there are fine but if you can't tolerate them, Jurlique makes a wonderful moisturizing one, for a more "natural" and gentler formula and for softer hands.  It's available at Beauty.com or Sephora.  Any other sanitizers are available from the drugstore.com website, so there's no need to stop at the CVS or wherever you get those sorts of products.  And I always love to read the customer reviews.  Shipping is free with a $25 minimum order.
10. Try to get everyone around you to cough into their elbows. I admit this would be great for me to master, but old dog that I am, I've not been able to master this new trick.  It's a good thing I don't go out!  (Or maybe it's precisely BECAUSE I don't go out that I've not formed this "new" habit.)
11. And finally, when you get home, walk to the nearest sink and wash your hands immediately.  Then strip down and get on clean (germ and virus-free) clothes as fast as you can.
12. Try cracking your windows at home open a tiny bit to let in the fresh air and sweep out the stale, germ and virus-laden air which can't help getting in the house from those who live with you.

A final thought: keep in mind what the rules are for a new-born baby visit in the hospital if you're not sure what procedures need to be observed.  Washing hands before seeing a new-born, check.  Covering your clothes before touching a new-born, check.  You get the picture!  Keep that in mind and you'll hopefully survive intact.

And here's hoping that everyone stays safe.  No, I won't be one of those getting the flu shot, but I have good reason not to.  Do you have questions?  CALL your doctor and see if you can get information from him/her as to whether you need to be seen or not.  Consider calling an ER before going over, if you think you need to be seen.  Often things just need to run their course and going to an ER can lead you to unneeded exposure to bugs you'd be best staying away from!  Again, talk to health professionals - especially those doctors who know you best - so that they can lead you in the right direction.

Here's hoping that all are doing their best, only better.  Stay safe everyone.  Ciao and paka!


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Friday Tidbits: Bits & Bobs of Help

An idea of the switch-in-the-cord idea,though not the sort of lamp I'd use for bedside. (But oh so pretty!)

It's Friday again and once again I'm so happy to see the week is coming to a close.  (I've written that a bit too often lately, haven't I?)  The family's been stricken with various degrees of the bug which never went away, all because of the freakishly warm winter of last year.  More than ever, I'm personally looking forwards to a few good, hard freezes to kill off as many of the viruses and bacteria as possible, those looming around our town. Last night hubs was almost spitting bullets because I had sheets of sweat coming off of me as I tried to write my post. Today, I can see that the worst is almost over, but I still just want to sleep, though still not sleeping as much nor as well as a "normal" person would.  Everything's relative!

Oh Dyson DC35, how I love ya!

• In fact, talk about sleeping: I've had more sleep this week than I've had in years!  I wake up and am totally miserable but finally fall back asleep for a minimum of a two-hour nap, unable to keep my eyes open.  Who knew there could be an upside to my flu?  
• Not too long ago, my BFF and I were on FaceTime and one of the things that came up (we CAN and DO talk about everything, anything and nothing, for hours at a time) was that she brought a gem of a vacuum cleaner.  She recommended that I buy the Dyson "digital slim," dubbed by Dyson to be "the most powerful cordless vacuum."  Well, I finally ordered it from Amazon and their description is no exaggeration, so good, in fact, that I quote:

• The Dyson Digital Slim vacuum cleaner has twice the suction power of any other lightweight cordless vacuum cleaner in use, making it the most powerful cordless vacuum. It is ideal for quick, flexible cleaning on all floor types, stairs, upholstery and inside the car. 

• Dyson engineers developed the DC35 for versatile spot cleaning- it’s suitable for every floor surface: carpet, vinyl, tile and wood. It has a motorized floor tool with two types of brushes. Ultra-fine conductive carbon fiber brushes remove fine dust from hard floors. Rotating nylon bristles remove ground-in dirt from carpets.

• The detachable long-reach wand is made from lightweight aluminium. It reaches high, low and into awkward spaces. You can also remove it and use DC35 as a handheld. A docking station conveniently stores and recharges the machine when not in use, or the battery can also be recharged separately from the machine."

I was thrilled to see that it was all and more than BFF (and Dyson) had described.  It's especially good for anyone who is sick and can't do much.  It breaks down into small parts and you can actually do stairs with a minimum of effort.  There are no pesky cords to mess around with (I absolutely have an OCD-like loathing of cords of any sort) and can grab it quickly for a small job like the carpet that's by my bed, without worrying about overdoing it.  And because it's so easy to use, you end up using it a LOT!  (Actually, it's quite addictive!)  For more on this miracle product, see this link.  It's worth every penny!  Check the before and after Christmas sales as BFF found a 20% off sticker price on Black Friday weekend, too late for either of us, alas, though we're not at all remorseful because it's just THAT incredible!  And a note: I had a bit of a sparkle and glitter episode from some Christmas ornaments we recently bought.  It was EVERYWHERE.  The Dyson DS35 took on the mess as if it were fighting the merest of jobs.  Phew!  

• With Christmas quickly looming ahead, I'm not sure we'll even get to finish the trimming this year. As soon as the lights were up on the tree, the ER runs started in.  It's a rather nasty GI bug. Forget about the outside of the house: we've only slapped a wreath onto the front door, this in a neighborhood and town known for its "city of lights" reputation with well over a million tourists coming in for the festivities.  Frankly, I'm surprised the neighbors haven't run us out of town yet. (I'm certain that they're giving us a year's grace period before doing so, so we have GOT to get back on track by next year!)  I'm trying my best to be mature and realize that hubs and I are no longer young enough (what???) to do the outside decorations ourselves and will have to start looking for someone to do the honors next year.  I suppose, too, that that IS the responsible thing for the person with CFIDS/ ME/CFS and/or fibromyalgia to do, though how I hate giving in.  But, it's all about "health credits" and "spoons" now. 
• And finally, such a seemingly mundane "little" thing which is driving me loony-tunes.  I'm looking for the lamp I had by my nightstand before we'd temporarily moved up to the attic.  It was the sort that has the on/off switch on a cord and, it turns out, it's such a great feature to have.  The on/off switch would rest against the side of my nightstand and it was so easy to just move my hand over ever so slightly and have the light off.  Instead, now I need to reach all the way over, through a jungle of items, trying not to knock anything down as my hand searches for the actual lamp in order to turn it off in the "usual" fashion.  Nine times out of ten, it wakes me up if I'm just about to fall asleep, often with a bit of a disaster as things fall over. With the little cord by my side, it was so easy to turn the lamp on and off... absolutely wonderful for the insomniac. If you have trouble with sleep and get upset because of the lamp issue, consider the lamp with a (toggle?) switch on the cord.  Oh my: who knew that there IS a wire out there that doesn't get on my nerves, but the very opposite.

And that's it for the day!  I hope that everyone's doing their best, only better and enjoys the weekend!   Ciao and paka!

A Shot In the Dark?

Soon!

It's almost autumn, which is, theoretically speaking, my favorite time of year.  I love the fact that soon we can once again go back to wearing sweaters - better yet, blazers and boots. (OK, so technically, not so much for me, but what's a technicality among friends, eh?)

Suddenly, I no longer spend too much time wishing my skin were removable like the lining of an all-seasons raincoat, although perhaps I should reword that statement as I would love nothing better than to be given a new healthy body - and a brain too, if that's not asking for too much.  If you have CFIDS/ME and/or fibromyalgia and even migraines, you most probably know what I mean.  (If) you're able to get out, it means that the days have changed!   Fall means not only beautiful foliage and crisp clean air, but that it's also possible to breathe again without feeling as if you'd walked into the kitchen of a diner before air conditioners became affordable, much less invented.

But to me, fall also means a dangerous time of year.  The temperatures are so drastic that one day it goes from 90 degrees to the next day temperatures in the 60's or below to the 40's and '30's, depending on where you live, or what the climate decides to do that year.  You finally get to the cooler temperatures and then "Indian Summers" begin and they don't last a week or so, but all too often seesaw back and forth, worse than any hyperactive child on a school playground.

Suddenly viruses and germs start popping up from all over.  Children going back to school means that those germs and viruses find a perfect breeding ground for those "goodies" to start spreading their wings - if those little nasties had wings, that is!

The part which *I* happen to "love" best is that anyone who comes into MY house and comes anywhere near me becomes a "Typhoid Mary."  That is, most often they bring home the viruses and germs and yet don't normally get sick themselves.

It's all to do with a huge subgroup - for argument's sake, I will call it "a subgroup," because, really, no one knows what the heck really is going on with this "umbrella" of illnesses we at the moment call "Chronic Fatigue and Immune Dysfunction" or "Myalgic Encephalomyelitis." (I love the later term, "ME," but not spelling out those words!)  It all has to do with our wacko immune systems, which don't even need to belong to those with CFIDS/ME or fibromyalgia but just about anyone with a screwy immune system or enough stress.  In my "subgroup" at least, I have a under-active immune system and an over-active immune system, both at the same time, affecting different systems.  For example, it's under-active while fighting infections but over-active in responding to the initial viral infection. 

This year we started this "Autumn Syndrome" early and this year we all came down with some sort of bug that's now going around town, starting with Labor Day weekend.  My feeling is "really???  Already?"  Yes, we all pretty much had a cruddy Labor Day weekend with a following week to match it, despite my optimism.  (When will I ever learn?)  I felt badly for my family but I was also feeling pretty sorry for myself too, I admit it.  I'm not a robot: I do have days when I get really cranky and it's just that much harder to laugh.  I also have to admit that all too often the only time I'm sure if there's something "normal" wrong with me and not something that's due to my core illness of CFIDS/ME/fibro is by seeing if my family is affected or the town is affected.  Other times I feel as I'm the canary in the coalmine which warns of what will be seen in the upcoming fall/winter season.

No, I do not get the flu shot each year, although I have a couple of times in the past.   Just as with every aspect of CFIDS/ME, even the advice on flu shots has gone back and forth as to "yes, DO get the flu vaccine, ARE YOU INSANE?" or "NO, do NOT get the flu shot! ARE YOU INSANE?"   I gave it up after my second flu shot which gave me the flu yet again, and pretty bad bouts of it at that.  After I got over the flu - in both cases - I was much worse than before I'd had the vaccines.  I'm glad that finally, most places no longer twist your arm about getting one because that's what mine had been: twisting of the arm, despite hubby, a relatively healthy person (knock on wood!) refusing the flu shot each and every year.

And though I DO have a problem with some vaccines (do we really need as many vaccines as are being hauled out these days?), I do believe one vaccine which has served me well is the "pneumonia vaccine."  I'd come down with severe bronchitis one year which turned into pneumonia, went straight into pneumonia the second time around, coming close to death because we had a hard time finding an antibiotic that worked on me and the third time it was an incredibly close call.  Period.  That's when we all decided that a vaccine would be worthwhile (understatement?).  In this case, however, we knew what we were vaccinating for, and knew that I would definitely not survive a fourth bout of pneumonia.

All of which is to say that please watch yourselves this season, especially if you're relatively new to this horrific ordeal. I'm not sure that all the doctors out there agree in regards to the flu vaccinations - a nice way of saying too many don't want to admit that they've gone back and forth on every theory they've sprung on us better than any Olympian winning gymnastics team.   

In the meanwhile, hoping that all are feeling the best they can be, only better.  Ciao and paka.

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!

The THING About Waiting Rooms...

Legs in training....

Since I promised to bring survival tips for my hoped-for readers, here's one 
that may appear to be a bit unorthodox but a real winner for me.

Anyone with any sort of chronic illness is very susceptible to germs and viruses 
from everywhere.  Obviously.  Duh!   With CFIDS/CFS/ME, our immune systems are 
hinky, thus the "ID" in CFIDS, the "Immune Dysfunction" syndrome part.  Our 
immune systems are over-active and under-active, both at the same time, so very 
contradictory in an illness full of contradictions.

I need to meet about every month or so with my long-suffering GP, who of 
everyone I've ever seen in my plethora of doctors over the past 37 years, from 
New York City across the good old USA, has been the best and most successful 
help in my care.  We make a good team, actually, as we've together tackled 
research and question seemingly everything that comes our way.  Some years we're 
gung-ho about learning every new thing, other years we just throw up our hands, 
give up and go into survival mode.  A small-town GP, he's more than a bit 
understanding and has more patience than I could ever dredge up, which is not to 
say we agree on all, but just that he's one of the best things that's ever 
happened to me.  Oh, he does sometimes see me as a bit of sport and I just know 
the man often revs me up to hear what will come out of my mouth next.  But 
compassion when need be, it's there!

However, I hate the germs and viruses that I seem to bring home each and every 
time I see him...or my dentist for that matter.  With my dentist we've agreed 
any work that needs to be done can start around April, once flu season is over, 
but must end by September, before flu season begins.  And the best part, 
perhaps, is that he's enforced these parameters at times when I've thought to 
myself, "flu season be darned," crazily thinking I was just too careful.

I can't exactly not see my GP, however, for so long.  So after many years, which 
included two serious bouts of pneumonia, we've worked out a system that seems to 
be the answer to some of the problems of my funky immune system.  My 
long-suffering hubby goes to the office, as I stay behind in the car with a book 
or my Kindle, signs me in, takes care of whatever finances need to be addressed 
and actually SITS in the waiting room for the moment when my name is called.  He 
then quickly runs out to the car and we go in through a back door, thus avoiding 
as many sneezing and coughing people as possible.

How I wish we had some sort of system like that when the kids were little and 
you'd take your children in for a "well visit," only to bring home three kids 
laden with chicken pox or some of the other childhood illnesses lurking in the 
pediatrician's office!  But I digress....

To tell you the truth I am always tempted to take some sort of germ-killer in a 
can and spray it at all within my reach.  Despite many outrageous things I HAVE 
tried, Lycol'ing my way to an exam room is even too much for me, SO FAR.

Yes, I may sound like a diva, but here is an example of why this has become a 
necessity.  I came down with a common bug going around one winter and was sick 
as a dog for two solid years.  Just as I was in the home stretch something 
strange happened to my legs...they turned blotchy and mottled with lovely shades 
of purple and red.  They've stayed that way for the most part, unfortunately.  
They are of huge interest to my doctors...they seem to love looking at them and 
speculating as to how the heck THAT happened.  I'm not so easily amused.  And 
poor hubby - my legs were what he'd first fallen in love with, only later my 
sparkling personality!  <wink!>

So, if your immune system is really wacko and you know that a needed or required 
visit to your physician may cause you to come down with everything down to the 
seven plagues of Egypt, consider my strategy.  Granted, it may be difficult to find 
someone in your life who's willing to sit in a waiting room full of sniffles and 
sneezes but it's a heck of a lot harder to come down with a bug that can take 
months and months to rid yourself of.  Plus I find that with each "flare," we do 
get more permanent damage to our bodies.  Ask my legs.