4 Fibromyalgia & CFIDS/CFS/ME Tips

Try to spend time with those you really love!

Today I bring you four commonsense CFIDS/ME/CFS and fibromyalgia tips some of which are actually helpful for all people, not just sick ones.  

This comes to you by way of my rheumy.  

• Blame your doctor: I love this because it's one of the best things you can do for yourself when you feel as if it's all too much.  That's why you're paying your doctors: to get help of all sorts, from physical to mental and spiritual, I dare say.  And if your doctor is worth his salt, so to speak, he WILL have told you these tips. Furthermore, you simply tell yourself that you not only have permission to do the following, but you have been ORDERED to do the following:
• Don't overdo it when you feel great/good.  Let's face it.  Most of those ill with the DD were over-achievers in their previous life and so it goes against every part of our being NOT to do all we can on a "good" day.  It makes us feel great when we accomplish anything.  We're "doing-it-all junkies" is another way to put it.  We also feel guilty when we don't accomplish those things which we think are on the top of our endless lists. So, keep in mind that on a good day, don't overdo it.  And yes, I realize that I'm very bad in this department.  
• Don't starve yourself when trying to lose weight; nutrition is so important.  I think my rheumy gets most upset about this one because his patients are overwhelmingly women.  And what do women always try to do?  Lose weight.  This is especially true because we are often on medications which make us gain weight, be it because we're always so hungry or because the medicine messes up our metabolism.  But he sees women doing great harm to themselves because of the weight issue.  So, try to take off weight carefully and in a smart fashion.  Once the vitamins and nutrients in your body are depleted, all sort of problems enter the picture.  Furthermore, those deficiencies often take years to truly recover from.  B-12 deficiency, for example, takes two years for full recovery.  The numbers on tests may become normal relatively quickly, but that doesn't reflect what is happening to the actual cells.  Here is where you need to be patient.
• Avoid toxic people.  We have enough problems in our lives and we have enough conflict about our illness even being real to begin with.  Do we really want to add toxic people to the equation?  Your time and energy are already limited.  Do you really want to waste precious health credits you've accumulated on people who poison you with their attitudes and passive/aggressive ways?  You know who they are.  Cutting them out of our lives will lessen the stress load.  Now I don't think you should say, "get the heck away from me you windbag, you blowhard."  Simply be conveniently too busy with things that really need to get done and spend your precious time with the people who bring you up instead of bringing you down.  

So, there you go.  Right from my rheumy's (and GP's) mouth.  Very obvious truths, but oh so hard to live them, I know. 

With that I say, I hope everyone's doing their very best, only better.  Ciao and paka! 


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Friday Tidbits: Changing Gears

An old High School game where we definitely needed to change our  strategy: something not easily done these days!

Do you have problems shifting gears?  It's one of the things that upsets me most when when it comes to my "psyche" and it's one of those pieces of information about the wretched CFIDS/ME/CFS and fibromyalgia nightmare that has helped me the most.  (Information is power!)  Once I realized it wasn't "just me," but the illness(es) that made changing from one thing to another so difficult, I could breathe more easily.  That's not to say that I'm finding it a whole lot easier to live with the DD.  It's just that I don't beat myself up as much as I used to, knowing that this is a problem that's a "classic" symptom of this whole mess.

And so having survived what the jaded part of me thinks of as the "dress rehearsal" to Christmas, that is, Thanksgiving Day, I realized today just how much I'm still learning to adjust to living with the DD.  Honestly, I DO love Thanksgiving.  I just wish Christmas came a little later so that we'd have a bit more time to recover from one holiday to the next.  But here are a few things I discovered or rediscovered, all having to do with the "changing gears" problem, in one way or another.

• Do the bath, hair, makeup and dressing BEFORE the day begins.  In other words, don't backtrack if it can be avoided.  Every year I tell myself I don't want to be sweaty for dinner and yet by the time dinner's almost ready and it's time for me to make myself "presentable," I don't have the energy to climb back up the stairs and go back into "clean myself up" mode.  And might I add, that I've not cooked a turkey feast in at least ten years - this from someone who thought that making five desserts was slacking off and I actually did need to hose myself down!  Honestly, what do I possibly have to get sweaty from these days - other than the huge effort of commanding hubby and kids in what needs to be done?  (That last part was sort of a joke!) Yesterday I finally remembered (!) that exhaustion, forced myself to come down "prepared" - and it was great!
• Don't let family (or friends) talk you into going for a bit of a rest before dinner!  Evidently, I was looking a bit peaked and against my better judgement, I was talked into going for a rest, with number #1 daughter doing the push-mom-up-the-stairs maneuver.  (There IS only one daughter.)  By the time I settled into bed, number #1 daughter reappeared to tell me it was time to eat.  Ah!  No more, dear daughter....  Huge mistake on my part, a rookie one at that.  Shame on me!
• If eating at the table is a hardship, try to plan out your strategy ahead of time as much as possible - and try to stick to it.  It's the "surprises" and sudden change of plans when I'm especially exhausted that contribute to the gear-shift problem.  If sitting at the table and eating makes food taste like cardboard - thus becoming a waste of calories - just take tiny portions and "fake" the eating.  Try to remember that you're really there just for the socializing.  I have no idea what got into me yesterday (other than the obvious huge quantity of food) and for the first time in ages, I ate too much at the table.  Well, when I crawled into bed, my stomach was full, but my taste buds were not at all satisfied and I had my "in bed" Thanksgiving dinner as well.  I'm sticking to the old plan from now on!
• "Let's go into the other room for dessert."  This may very well read as a contradiction but this whole mess we're in is a huge contraction.  So, having said that....  Yesterday a new tradition was begun, though somehow I SUSPECT that this won't work QUITE as well if you have a large number of people getting together.  We only had family and so "the other room" this year was my bedroom.  Usually we have dessert at the table, with me about to pass out, literally.  But because the filter between my brain and mouth wasn't working well yesterday, I found myself saying, "why don't we eat dessert upstairs?" It worked out beautifully, especially as hubs was extremely tired from cooking since 7AM with no break.  Yes, TV was awful, but we all had a great time lounging on the sofa and bed and having great, though exhausted, laughs - the perfect way to start burning up those awful calories!

So, having problems with shifting gears?  We still have Christmas and New Year's to get through.  Hopefully, the information here may give you another weapon for your arsenal!

I hope everyone had a wonderful Thanksgiving Day.  I certainly had much to be grateful for this year besides my family's health. I also had another great gift this year: that of the spoonies and the many friends I've made via Facebook, blogging and twitter, old and new, near and far, some very, very far!  I've had great support from so many in a year when I truly needed it, so thank you all - I think (hope!) y'all know who you are!

I hope everyone's doing as well as can be, only better. Ciao and paka.

Friday Tidbits: Labor Day Weekend

Back in the day when you couldn't wear white after Labor Day.

It's Labor Day weekend, the unofficial end of summer here in the States.  Yay!  Monday is a federal holiday and I'm ready for some extra time with family.

Holidays are funny.  You can expect so much and get very low when reality hits or you realize that you are feeling cruddy and begin to think that you're wasting a perfectly good three-day weekend.  Or just the stress of it all gets to you.

So, I thought I'd end this week with a list of some of my very favorite things and/or things that I AM so grateful for, ones I perhaps don't think about or verbalize often enough, or things that happen rarely, but when they do....!  My hope is that it gets everyone in the best mood possible and thus increases our enjoyment of this special weekend.  Here we go!

I love it...

• When someone doesn't realize that I'm seriously ill, if at all.
• When I have the ability or opportunity to get someone to smile.

My happy daughter, my good friend and I "do" FAO Schwarz in NYC...

• When I can help someone.
• When I can accomplish anything at all and REALLY realize that I can still be a part of life.
• When I have a day when I can get out of the house, or even out of bed.
• When my pain meds actually work.
• When I see my kids healthy and happy.
• When I have a clean house - so I'm not stressed over what I really want to do, but can't, and can really enjoy my surroundings.

That's all that left of Sarum: and a "happy" demonstration!

I love:

• My friends, near and far.
• My many doctors and other medical professionals who've really understood me and helped me over these many, many years.
• My BFF.
• My hubby - especially when seeing that he's not stressing out over me.
• My kids, period.

Always laughing and making others laugh: that's my daughter.....

• Books.
• Pictures of my friends and family, over the years, and the memories.

Summer get-togethers of kids and kids and kids....

• Flowers.
• Travel.
• Talking to my BFF for too many hours over the phone or via FaceTime until we both get "phone ear."
• Knowing that my BFF knows exactly what I mean.
• Telling or asking hubby JUST one more thing all day long, but especially as he's just about to fall asleep...

"So, what do you think about...."

• Sleep!
• Not having to make a decision.
• People-watching with my BFF, especially at a swanky place which does a tea.

My BFF takes tea at the Ritz in Paris (we didn't actually stay there!)

• Finding yet another coping mechanism for CFIDS, fibromyalgia, migraines and other "inconveniences."
• Dinner around the table on holidays.
• A good meal in bed.
• Laughter!!!

Washington, DC, out on the lawn in front of the Library of Congress.

• Laughing so hard I fall out of bed - which literally happened to me twice in the last two days!

My son always knows how to have fun and how to make people laugh.....

I hope everyone gets to laugh so much this weekend that they ALMOST fall to the floor.   Happy Labor Day weekend!

And as always, I hope all are doing the best they can be, only better.  Ciao and paka!

Laughing from my sickbed about my beloved Dove....

I began my last post with the words, "Color me lazy," because I've lived the 
vast majority of my life with little more than Dove soap.  But suddenly I 
realize that I'm not the only "lazy" person out there who's my age, from the era 
when we cared so much about makeup, but really did not worry too much about our 
skin.  

Thank heavens most of us were using Dove soap, now called Dove "beauty bar" in 
order to reach/grab the beauty business.  I've seen that it's now winning awards 
in "best of" lists for magazines such as InStyle.  But the dirty little secret 
here: the Dove we used back in the '60's and '70's is not the Dove of today.  
Believe or not, but our's was much better.  It's been reformulated over the 
years and that's just plain lousy!  Many of us old-timers are spending a lot of 
time lamenting the demise of the old Dove and get more than a bit upset when our 
hubbies accidentally bring home a huge lot of the wrong kind of Dove, like the 
new sensitive editions, exfoliating versions and so forth.  The newly 
reformulated Dove we can sort of live with but the new kinds out there?  Don't 
even get us started!  And what, we wonder, ever happened to the 1/4 moisturizing 
cream of the ads and commercials of yore?  Like I said, don't even get us 
started!

Dove has now spread out to dozens and dozens of products in an effort, I suppose, 
to stay in business with all the face cleansers out there today.  Around the 
time I was in eighth grade, Dove's only competitor seemed to be Noxema, and who 
even remembers Noxema today?  Pond's is still around but that seemed to be a 
product our moms used.  Oil of Olay was a competitor too and I remember using 
that lovely pale pink lotion in a glass bottle on my face for a while, loving 
the smell of it, buying it only when it was on sale because those were our salad 
years when hubby and I could barely manage the rent.  Sooo silly because I 
didn't really need it.  Dove took care of everything, and anything extra I put 
on my face usually caused a small bout of bumps of one sort or another to come 
out as if to warn me what would happen if I even thought of using anything but 
my beloved Dove.

When the Soviet Union fell apart, I flew to visit my cousin in '96, a time 
when Russia was suffering severe shortages of everything from basic aspirin to 
basic food.  Along with candy for her grandchildren I carried many, many bars of 
Dove as a treat for my cousin.  Can you tell I love the stuff?  (And yes, I did 
bring those precious medicines that they needed back then...I'm not completely 
superficial!)

In the hospital I once made the huge mistake of showering with the soap they had 
there - a reputable brand - and within five minutes I started to scratch all 
over.  By the time I called hubby to quickly bring over some Dove from home, 
rashes were setting in.  It was a nasty picture.  I'd never used anything but 
Dove even on my children as babies, having made many a convert to Dove over the 
decades, but from that hospital moment on, I haven't even traveled anywhere but 
with my Dove.  My cousin in Russia, I felt, deserved no less.

My BFF - a term I'm not overly fond of because visions of Paris Hilton and 
Nicole Ricci bounce in my head - and I so love Dove that when she went on her 
first big trip to Europe with her hubby she actually calculated exactly how much 
Dove she needed to bring with her to carry herself and her hubby through those 
weeks but not have any to bring back home with her either.  (And people wonder 
why we've been best friends for over 41 years?)  She knew Dove's properties so 
well that her calculations were right down to the very last day away from home.  
When we traveled to England and later to Paris, we just grabbed however much we 
thought we needed and then some.  By the time Linda went to Europe with her 
hubby, the airlines were cracking down on how much weight and how much luggage 
could be brought with us.  Such a shame!

As I'm discovering a whole world of new CATEGORIES of beauty products (more on 
that to come) I realize that we were so lucky to have had Dove.  It was an era 
of getting as tanned as could be, even if some of us (read pale-skinned me) 
couldn't tan but burn to lobster red.  Dove, which I still use religiously, I 
have a feeling will never be substituted, that is, if they more or less stick 
to their old formula.  My other products may come and go, but my Dove, I hope, 
will be here to stay.

Laughing from my sickbed with Oscar...

It's the day of the year that, I dare say, is just about a religious holiday in our home: Oscar Night! This is the day that probably has the most interesting memories tied up with it, more so than any other day of the year. Christmases come and go, with each tree looking more or less the same.  But Oscar night....oh my, now that's a totally different animal. 

When my vacation-phobic hubby announced that he had to be in London for some sort of business one particular year, I was NOT about to allow him to go alone!   I don't even know where to begin on how very wrong it would be for him to be in London, my absolutely most favorite place in the world, and me home with three crazy kids? Was he nuts????  Huh.  In his dreams was he going without me.  

Well, I finally talked him into a family vacation, offering to fly out with the three young kids on my own once his conference was over.  My children, the youngest seven years old at the time, the next eight and thus the oldest nine, turned on ME!   You see, though this was months in advance, they knew exactly which night the Oscar's would be on.  I looked at them askance, wondering if these kids were in fact children and not some sorts of aliens as my youngest turned away from me to a quick huddle of "the three" and heaven only knows what they said.  

Oh what turncoats!  They wanted it understood that they were not about to leave the good old US of A if it meant missing Oscar.  As I tried to overhear what was being said - this WAS my chance to go to England about to disappear, after all! -  I heard little murmurs of "VCR, but that wouldn't be live," muttered by someone.  Finally the seven year old turned to me and said, "Mom, you can call and find out if they're going to show the Oscar's in London.  I think they have movies there too?" Ahhhh....out of the mouth of babes!   With that he went off to call the airlines to find out which movies would be shown during the flights.  I had absolutely no idea you could call and find out about these sorts of things but my munchkins knew, and how to do it, too.  Oh, if ONLY I were exaggerating. 

Well, we rented a flat and it was a wonderful time that we had, including watching the Oscar's.  The kids and hubby would go out and I stayed in, blissfully reading in bed most of our two weeks in London.  And hubby, at the suggestion of the kids, "hired" a wheelchair for me.  Well, there was no going back after that!   The Brits were so wonderful about a wheelchair and we were given such a spectacular behind-the-scenes tour at Kensington Palace and special treats at Nottingham because of my embarrassingly uncooperative body that my kids thought they should drag out old mom in a wheelchair for everything! 

But I digress.  Back to Oscar. We had a cat, whom hubby called "the million dollar cat" because as a kitten she became extremely sick and instead of following our vet's advice and putting her to sleep, we sent her to Columbus' vet school for hospitalization and testing where her bills were, understandably, phenomenal.  Misty was our miracle cat whom we had for over 12 years, who needed chemo every day, which was almost the least of her problems. She was a very sweet cat and always wanted to be where the action was, wherever that might be, but never IN the action, just a bit off to the side.   Not on Oscar night, however!  On that night, the kids would pile into my king-sized bed with me, hubby in his usual wing chair next to the bed, and Misty, for one day a year only, would want to be with us, center stage, literally and appropriately. 

When my daughter went off to college, the day the Oscar's rolled around was the day that I truly felt my "empty nest syndrome" at its worst.  Only years later did I discover that my daughter also missed seeing the Oscar's in my bed.  She tried to make it home for the "holiday" but it just didn't work out. Monday morning classes and all.... 

Just a few years ago, I had hubby bring a table up to the bedroom and my oldest came over to watch with us.  I had just started into my Jonny Bowden's "150 Healthiest Foods" book, my latest food program...if the food wasn't in there, I wasn't eatin' it!  That night I had organic clementines for the first time, as well as organic high cocoa content dark chocolate, creamy French Brie.... Oh, that was a particularly good Oscar year. 

Looking back, I think one of the reasons that Oscar night was a biggie in our home was that that was one night when mom was a real mom and all of us piling into my bed in front of the TV wasn't "weird." I wasn't in a state of guilt or torment that I was in my usual long nightgown attire.  Some of Hollywood's finest appeared to be attired similarly, though just a tad more glamorously. 

We've not had a whole night of "us five" together for Oscar Night in a long time, but as we watch part of the show tonight, wherever "we  five" may be, I just know that the best part now is the memories of this most quirky night.  Last year my daughter ordered "petit fours," which I'd not had since prom night of 1970, and not a fan of them then.  But my daughter's petit fours were special. These had movie-themed decorations on each, which she'd ordered from somewhere for an ungodly amount of money...but when I tried them, they were bliss, melting in my mouth with layers and layers of delicate flavors revealing themselves slowly and richly. 

This year, we may not be together for the entire Oscar ceremony but I'm sure I'll send a play-by-play for a couple of hours via Facebook to the kid now living in Malaysia and I may be on the phone for parts of it with my daughter.  But it'll still be special, even as my hubby falls asleep next to me, denying he'd been snoozing.

Laughing from my sickbed starts...

In the past year and a half I’ve learned how to navigate the Internet, somewhat, finally!  It’s all due to my family’s latest effort to drag me, yes, kicking and screaming, into the 21^st century, this time with an iPad.

I call it the “idiot pad,” because surely it had to have been invented for those like me who absolutely fear computers. Or are constantly breaking them.  But more on that later.

I started, after a few months of leering at the iPad with disdain and suspicion, to fool around with the darn thing.

Oh yeah.  I missed a biggie here.  I’m basically a bedridden person.  So the idiot pad was perfect for me in that too.  I didn’t have to get out of bed to rediscover the world of the Internet.  Yes, I could get out of bed some days and try to communicate through computers which I feared and broke on a regular basis, but my brain was then so fogged up that it was a truly painful and awful experience for all.  In bed with my iPad, I could actually think!  And I love to think.  It’s actually one of my hobbies, sometimes to my family’s dismay.

But this blog is not going to be just about being sick.  Frankly, I try to hide my illness from the world, often successfully.  People tend to think I’m simply a hermit.

I, in turn, discovered Facebook.  Actually, if truth be told, I was forced to discover it, but that too is another story, for another time (hopefully!).  As I found friends from my past and formed a few new friendships, I now heard a new message from them.  For years and years people would say to me, you need to write a book!  Ugh!  I’m not up to it.  Now I was hearing, “you need to write a blog.”  Me: what’s a blog?  (I told you I was dragged into the 21^st century but you didn’t believe me, did you?)

Then after ordering books from Amazon on blogs – but never reading them – I thought, no blog!  I’m much too private a person for that.  I mean, I was upset when the number of people I’d friended on Facebook reached 13, then 20, then 25.  I kept having to up my “no more than” number.  I’m up to 40 now and that just about makes me break out in hives.

But I think the time has finally come to start a blog, or to at least try to start one and see where it goes.  I stumbled over one blog a couple of weeks ago, A Model Recommends, from a British model who’s just so sweet and funny, writing about beauty, skincare, all sorts of the fun things I do love.  In secret I’m a bit of a beauty products junkie, though not successfully since I….  Well, more on THAT later too!!  I thought to write to Ruth, our model, to see if she’d consider adding anything at all for those of us with, ahem, shall I say “slightly more mature skin?”  Well, I discovered, almost all on my own, that her mum had started a blog too!  What fun.

I then desperately wanted both of them as my buddies and that’s when I realized that if I didn’t want to become some sort of stalker crazy person, it may be best if I just go and try my own blog.  Even my hubby, who must win some sort of award for being a privacy nut, keeps saying I need to write a blog!  And I’d also just realized that you can learn everything and anything you want on YouTube, so inadequate computer skills were no longer a legitimate excuse.  (More on that later on too!)

And so I am going to try this new social experiment.

Most of all, I love to laugh and I love to make other people laugh.  No, not in a Billy Crystal or Joan Rivers way (can you tell I have the Oscar’s on my mind?) but in a funny next-door neighbor sort of way.  So, I do hope this blog will be funny or add a chuckle to your day.

And I love to read…in fact, I‘m a bookaholic but due to a few crises in the last couple of years I’ve, for the first time in my life, not been able to read.  But I am starting to regain that concentration, so there is hope.  I belonged to a small book club I co-started in our small town when my oldest was in 3^rd grade (she’s 32 now and is a teacher with her own self-contained autism classroom – forgive a mom for bragging!) and this was before anyone had even heard of a book club, even Oprah.   But we fell apart after about 15 years once retirement started in, as well as politics creeping in….

So, books, yes.  Politics, no – not in this blog.  Fun, yes, seriousness, yes, at times, as in how to live more easily with chronic illness, tips and so forth.   Books, a bit of history…how, even, to get more sleep, a biggie for all, I’m discovering, much to my dismay.

Beauty, yes!  Fashion, yes!  Gardening, yes!  Cooking, yes!  Travel.  Being a mom, a wife, a best friend, yes, yes, yes!  Even a bit…ok, perhaps a LOT, of musings.  Certainly ramblings, which I’m so famous for, will unfortunately, find their way into this too.

But most of all, all with a bit of laughter.  It helps cover a multitude of sins and helps ever so much to get us through whatever problems any of us are going through!  Such a cliché, I know, but there you have it….

So, kick up your feet and join me in what I hope will be my new adventure!

All best,

Upa