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

It's all a balancing act: walking up First Avenue to our apartment in NYC with baby trying to climb onto and off my shoulder!

I apologize for having been MIA since Friday (in case there are masses of faithful readers out there mourning my absence and my ever-so-witty humor *ahem*) - but this CFIDS/ME/CFS and fibromyalgia body of mine has been betraying me at every turn - or so it seems.  This happens to me every single autumn/fall as the barometric pressure changes have their fun toyng with me, whereas the temperature changes do THEIR damage.  MY rheumy told me yesterday that all his fibro patients are absolutely miserable.

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

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

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

Now, I'm not writing this in order to gain sympathy points or votes - that would be rather silly. What I'm writing about is my reaction to being this "new" sick.  Some include, but are not restricted to:

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

I think you get the messages.  These symptoms are just the tippy top of the proverbial iceberg. 

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

• I've been acting like a bit of an "in your face teenager" daring my CFIDS, ME/CFS and fibromyalgia evil fairy. Just as I did wrong with the "non-stop eating" celebration of the dreaded and surprising hypothyroidism, I'm daring, in a way, the DD "fairy," to inflict more damage onto me like a playground bully, though this bully is so much stronger than any bully from school - as I should well keep in mind.  

• I'm mad!  I'm angry!  I've had it.  I've adjusted, compromised, accepted so much of this stupid, idiotic illness for 38 years and I realize that really, I don't have but so many years left - after all, I've closer to 80 than I am to 25!   I have to do what is right for me and not live someone else's guidelines or dictates, because I've wasted enough time already.  I've been ill way too long and realize that in the next decade or so nothing is going to cure me and nothing is ever going to give me back even 10% of a normal life.  Like the person who got severe polio before the vaccine, I'm never going to get well enough to really live life.  Oh, I'll keep fighting - it's part of my nature and DNA - but I'm also trying to accept reality with what will give me a semi-normal standard of living occasionally.

• The holidays are coming up and I refuse to live a "Green Acres" life, the old sitcom where the couple from NYC buys a house out in the country and can never finish remodeling the hovel.  Our remodeling has been going on for 5 years!  Good grief!  The only saving factor about the kids going away to school was that my house would finally be immaculate.  Wrong: I was soo naive!  I live in fear that the remodeling will be completed the day before either hubby or I keel over and we will not have enjoyed a finally put-together house! (Almost!)

• The holidays are coming and that is a big problem for me.  I do not do well with holidays. I used to decorate the house with absolute perfection, down to the Christmas china, chargers, baking peroshki's and cookies, at least 3 or 4 different cakes for dessert.  We'd have Christmas parties.  Even my book club finally decided that each December meeting would be at my house because (LOL!) why bother at any one else's?  (Fine solution for me as the house was washed and sanitized to a inch of its life anyway!)   

But now I have to figure out a way of dealing with all these emotions, planning what is feasible, what isn't, what I won't give up, what I should.  I do know that I will TRY and do all within my power to drive myself harder this Thanksgiving (and hubby's birthday!) and this Christmas than I've been able to in the last 5 or 6 years, because our family's had incredibly bad luck, as well as good luck, health-wise lately and we have much to be grateful for. I want to fall asleep every night (or day or whenever this dysfunctional body decides it'll give me a break and let me sleep a bit) feeling as if I've accomplished something.  Last night I was able to crawl through two rooms that are jam-packed with everything from other rooms and managed to find 3 "must" tablecloths and linen napkins, was able to crawl to the washer and managed to do 6 loads of laundry.  Hubby took care of the dryer (I trust him with the drying part, but never the washer!) and he folded them away to take to the cleaners for pressing. 

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

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

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

A CFIDS/fibro-Friendly Beauty Line

My latest planner workhorse, it's taken me to a lot of places and  has room for a few extra products in the  detachable pouch on the left side.
 

If I had to pick one beauty product line for the foreseeable future, especially one for my funky CFIDS/ME/fibro skin, it would most likely be a hard choice between Chanel and Trish McEvoy.  Chanel is famous, a true class act.  In the end, however, I think it would be Trish McEvoy who'd win out.

Each and every time I use her products, I have at least a nanosecond where my mind says, "this beauty line is really pretty darn perfect for those who have CFIDS/ME and fibromyalgia."  Truly!  Our skin is just so finicky and unpredictable.  Yet I've been using the line for ten years, at the very least, and have never had any skin problems with any of her products.  (Knock on wood: I can't afford any more bad skin reactions for a while, thank you very much!) 

Trish McEvoy is rightfully famous for three areas in the beauty industry: her incredible brushes and her unique and ground-breaking planner system, the "Makeup Planner" systems.  Furthermore, everyone also agrees that a huge part of the reason for the Trish McEvoy line's success is that her husband is a dermatologist.  Combine the science of dermatology with the creativity of a makeup artist and you come up with a pretty amazing line of products, from skincare to cosmetics to fragrances.

I must admit that I'm very partial to brushes in the first place and the TM brushes are amazing. They're always well-balanced in the hand and put makeup on very nicely. They're incredible for the "blend, blend, blend!"  The brushes with the lucite handles are almost works of art.  And the travel-sized brushes in the smaller planners are pretty decent as well.

But I do think that what Trish McEvoy will always be best known for is her unique makeup planner system.  I must say that over the years I've bought several of the limited editions of the planners, as well as the traditional ones, from the smallest sizes right through to the mid-size planners and even one of the large ones.  (BTW: the smaller ones make for great Christmas presents for a special daughter or friend.)

I return to these planners over and over again, especially if I'm forced to travel anywhere. They are such a great answer to an easy way of using fewer "spoons" and fewer "health credits," whether it be for getting ready to go out your door or packing for a trip. The makeup can be moved around from one planner to another. You can reorganize any of the planners to suit a short trip or a decadently long one, from one season's colors to the next. Sometimes I get flashbacks of coloring and organizing toys in kindergarten and think to myself that these planners are the adult equivalent of those early years.   Fun!  Great fun!

I'll revisit Trish McEvoy in the future (please! someone remind me if I forget!).  If I were to describe all the products in her line it'd be such a long post that I KNOW I'd end up chasing away even my most loyal and diehard readers. Her brilliant, beautifully designed brushes alone are a post unto themselves.

As I looked over my collection of Trish McEvoy's products and compared it to what is currently in the stores (available at Nordstrom, Neiman Marcus and at Saks Fifth Avenue). I noticed that one product I love, the "Beauty Booster" moisturizer/primer that really and truly worked (even lifted!) appears to have been discontinued or changed formulas.   Don't you just hate it when a favorite product is suddenly dropped?  However, I saw a couple of skincare products that I'll read up on.  If the reviews pan out, I'll give them a try.  Knock on wood, but Trish McEvoy hasn't let me down yet!

In the meanwhile, I hope everyone's enjoyed the beautiful autumn weather this past weekend. Yes, the temperature changes are a bit rough on us. Our symptoms worsen with the changing seasons, but the beauty out there, even if it's only looking out of our bedroom windows from bed, is worth it in so many ways, or so I hope!

So, here's to all feeling their best, only better. Ciao and paka!

Another example (and view) of the "Planner Makeup System"

Please not that I do not have any financial compensation in any way for anything on any of the posts on this blog!  Everything is my very honest opinion.

Identifying Sensory Overload - and how to deal with it.

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

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


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


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


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


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


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


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


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


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


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


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


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


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


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


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


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


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


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


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


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


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


But to sum up:

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

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