About Me

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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Wednesday, October 10, 2012

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

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

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

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

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

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

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

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

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

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

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


  1. The past 3 years have been very difficult for me with regards to the Fibro. I feel like I've aged decades rather than 3 years. It has to be the increase in humidity (there's some scientific study showing the increase), no real spring, very hot and humid summers. I used to love this time of year but, now it leaves me wiped out and with pain that goes to the bone(s). I've spent more time than usual in bed.

    It's upsetting that I can no longer enjoy the fall like I used to. Between the cold that hurts like a b*tch and the high mold levels thanks to wet fallen leaves, my Fibro runs amok. The previous years were more depressing in terms of holidays - coming to terms with not having the energy to decorate and bake. I've accepted it this year. That's not to say that I'm a happy camper. I alternate between DEEP depression and INTENSE anger. While I realize it wouldn't cure the Fibro, I'm sure I'd feel [emotionally] better if I could punch my 2 jackass surgeons.

    My Yorkie needs a bath. In fact, I got out of bed a few minutes ago to give him a bath/shower. You'd think it would be easier to bathe a Yorkie than a Labrador but, you'd be VERY wrong. It's exhausting and I end up with welts where he decides to play parrot (climbing up my arms to get away from the water). I won't bring him somewhere to be bathed because 1) I can't afford the cost and 2) he'd freak out BADLY. So, I sit here and ponder when today I might have enough energy and pain management to bathe him.

    I typically feel better very late in the day; by then, I've had all 3 doses of my meds.

    As for anger part LX (I figure I'd had at least that much today alone) - if my ex-boyfriend marries a good person, I'm going to go batshit crazy. 10 years - TEN YEARS spent with him and I'm apparently too much of a financial burden because I can't work full time. My big bill each month is my personal health insurance ($714/mo). Of course, if we married, I'd be under his federal government insurance and that MASSIVE bill would be gone. The thought of him inspires anger, sadness, a wee bit of self-hatred for wasting SO much time with what I'll euphemistically call a feminine hygiene cleansing product. This all simmers under the surface and then comes up as TMJ flares and deeper depression every so often. While it's lovely that my family and friends would like to beat him senseless (they wouldn't actually do it), it would be far lovelier if he would realize that eventually dying alone isn't a good thing. He told me, and I quote, that "maybe he just wants things to be TOO perfect."

    Anyway, I feel your pain - literally and figuratively. I wish I could take an anti-depressant to numb me a bit but, you can't do that while taking Ultram - lest you get serotonin syndrome. I see someone every few weeks to vent - apparently it's not good to bottle it up. My life goals have changed from having a successful career, a husband, and a couple of kids to winning the lotto, getting and keeping INCREDIBLE medical insurance and traveling with my 2 dogs. I'd have to get a rockstar bus because there's no way I could fly with my chronic dizziness and migraines.

    I hope tomorrow sucks a lot less - for you, for me, and for your other readers. : )

    1. Hi Melissa!
      Look what I found last night! The infamous serotonin question! Remember neither of us could recall the question? it was at the time I had my GB surgery. What a relief to have found it!
      Now i can see the part of your comment which caught my eye. I have an idea of an answer. Give me a few days more since I'm crashing so badly now - from hauling myself out of bed to DMV! Besides, what's another few days after 6months? ;) Xx