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.

Tuesday, September 11, 2012

One "Beautiful" Day in the Life of Irina Vladimirovna

Worried and exhausted....
Are you in the same boat as I am in when it comes to your face, body and sweating? Yes, that's right, another one of the "uglies," the sweats. 

You find that you need to be somewhere - be it a doctor's appointment, your son's wedding half-way around the world (ahem), or you simply need to meet with someone in your home for a thousand different reasons. But you have severe CFIDS/ME and/or fibromyalgia so how are you going to accomplish this goal?

You've taken your bath (hallelujah!). If you've thought things through, you feel you might be prepared. You've put out all the paraphernalia needed to get yourself clean and presentable, from washing your hair to washing your face with a couple of facial treatments thrown in - at the very least, hopefully a cleanser that's also exfoliated the skin because we do want to get rid of those nasty dead cells and encourage new cell turn-over.

If you've thought things through and planned, that means you've also thrown a serum of some sort onto your bed BEFORE climbing into the tub because if you'd been thinking clearly before the bath, you'd realize that after your bath, it will be a challenge (huh!) getting from the tub to the bed - you know you will collapse. Forget about towel-drying yourself completely or the wet hair: who cares? You're about dead!

What happens is that, hopefully, you have collapsed on the bed and not on the floor before reaching said bed. The little cheerleader in you is happy, rooting you on! The realist in you is nagging you. But the part of you scarred by society and too many ignorant psychiatrists and psychologists is worse than any military sergeant in basic-training yelling in your face, "you have to get up now! What are you...a wimp?" as you want to simply melt into the bed linens further, into the very mattress.

"No," you want to scream. "I are NOT a wimp!", although secretly you do doubt yourself deep inside because of the messages sent to you even by some CFIDS/ME specialists, who too often do not take into account how different each of our cases are.

You've now spent the vast majority of those precious "
health credits" - the ones you'd worked so hard on saving in the previous days, weeks, even a month or two - on the initial part of the ritual. Something within you doesn't allow anyone outside your most intimate circle to see you when you are not at your best, and that most certainly includes those times when you and the cleansing part of your routine are NOT, let's say, "best friends." 

Your hand searches and hopes that you did indeed remember to throw a serum onto the bed, as well as a small towel because you're drenched in sweat. You feel as if you need to stand under the shower in order to wash off the sweat, but you couldn't take a shower to begin with because you have orthostatic intolerance and can't stand up. Forget about the chair in the shower bit: that's just another thing to fall over or off of and get yourself tangled up with, risking not just bruises, bumps but also body parts - as you well know from previous experiences, the hard way. Besides, rinsing off in a shower still will make you sweat all over again...it's the illness, stupid (you tell yourself!).

But you want the serum on your face! After all, your dead skin cells are (hopefully) gone and your face is ready to receive whichever treatment you've decided upon, in my case either a hydrating one or a "radiance" one to get me that special glow. (Eye-roll!)

Until just recently, I had an air conditioning unit stuck in my bedroom window and after I gathered enough strength to drag myself off the bed, I'd turn the a/c on. I'm sure if anyone were outside my window when the temperature outside was 30 degrees or worse, 20 degrees out there - that's below freezing for those of you on the Celsius system - they must have had validation that the family in our house was indeed insane. But naked as a j-bird, I'd stand(ish) in front of that sucker and let it cool my body off from the assault of taking a simple bath.

Ah yes....dried sweat. That's always a treat. But what else can you do?

Now, however, I'm trying to figure out a new system as the a/c unit has been removed and the addition that's my bedroom has been hooked up to the central system. I may try sticking my head in the little fridge in my closet and hope that works. There's the possibility of having a "volunteer slave" (huh! Think hubby or perhaps daughter) handing me cold compresses to cool my body temperature, which oddly enough is still at its usual 95.5.

Over the next two hours, I'll need to stop (lie down in bed), get up, put a bit of make-up on, rest, put a bit more make-up on, rest - you get the drill - over and over again.

Finally, my ordeal is over. The hair is about as good as it's going to get and the "beauty routine" is finished with eyeliner more or less in place - what can I say? I'm a product of my generation in addition to having invisible 
eyelashes and eyebrows. Hopefully, I've found something in my closet that actually fits and works. Between whatever my real weight may be and body fluid shifts, huge bloating -or miraculously, no bloating - my clothes sizes change drastically - even my shoe size - forcing me to have many different sizes of everything I wear, including shoes. Is it surprising that I live and die by the scale? It gives me a clue as to where to start on the clothes front.

But one final thing keeps going wrong: the sweats. No matter what, I can't keep my head from sweating. I can blow dry my hair throughout, but my scalp starts sweating and just won't stop. My hair frizzes. I start to look as if I've stuck my head under the shower.

I keep up with my make-up, but that, too, keeps sweating. Put on a layer of anything and the exertion makes my face WET! How is it possible to have dehydrated skin and sweating skin both at the same time, I constantly wonder? You envision a person in the middle of the desert, stranded, and you gulp water like crazy to make up for the water lost to perspiring, only to find yourself bloating even more, and the face sweating off any product you put on it.

So it's back to bed, yet again, flopping down and as you stare at the ceiling you try to think, what are you going to do? Your slave (hubby or daughter, sometimes both!) try to give suggestions you've completely forgotten because fibro-brain has set in long ago, big time. You ask how much time you have left until you need to leave the house or simply need to be ready and are told what the time is. You try to hold on to your last bit of patience because you don't care what the darn time is. You can see the clock or your watch perfectly well. If you were able to calculate the time now to the zero hour, the time you need to be ready, there would be no need to have to ask how much more time is left!

You're almost there. You know your hair is not going to get drier - that's a lost cause, but at least your scalp is clean. Your makeup's on, but unfortunately, it's just about to slide off your face.

Forget the shakes - you've long ago learned to live with them. Your "slave" helps you with the bottle of water that you chug down, with a supply of a half dozen more in a bag he/she carries for wherever you're going, and hands you the cane you have a love/hate relationship with. It helps keep you away from a wheelchair, but it IS a defeat and a sign for all to see that you do have a problem.

You walk out the front door, smiling at the world. Your daughter tells you you are better than any Oscar-winning actress because almost no one suspects how ill you are, wondering only why there's bit of a sheen on your face....

And very soon, we'll talk about how to get rid of said sheen, to make you look your best - so healthy, in fact, that it leads people to say those words we hate most - for oh so many reasons - "but you don't look sick!"

Until then, I hope all are feeling the best they can be, only better. Ciao and paka!

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  1. Irene - Your comment under your photo says "worried and exhausted" but I also see "determined and undaunted." You're an inspiration for your tenacity and spirit.
    We can all use some of that.

    1. Oh Martha! How very kind of you. I certainly appreciate the sentiment! Actually this picture was taken shortly after my daughter had been rushed to the "major medical center" by ambulance - as my son and I followed as fast as we could - and hubs was having emergency surgery in our local hospital. What a day! xx