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.

Sunday, March 25, 2012

Spring and the CFIDS "on/off" Phenomenon...

Our baby weeping cherry tree made it through the non-winter.

It's spring and that alone puts me into the best of moods.  My legs are killing me and I am thrilled about it!  Why?  Well, this past week I made myself run out (metaphorically speaking, of course - I actually practically crawled down the stairs) to take a few pictures with my iPod of the bulbs coming up.  Oh what freedom!!!  I've not been out of the house for weeks - months even, canceling doctors' appointments right and left - and then worried I'll be dropped by my doctors for being so "irresponsible and/or for wreaking havoc on their schedules.

It had to have been funny for any neighbors looking out and seeing me getting down on the ground for some close shots, in something looking suspiciously close to a nightgown.   Actually, it must have been interesting to see me at all. I am the "phantom neighbor," sort of like during my kids' high school years, by which time this horrid illness had become so severe that I became the "phantom mom."  There were rumors that I existed but no one was REALLY sure.

Anyway, the next day after my "photography" adventure, I happened to glance out the window (I should try to do that more often) and noticed that the trees were in bloom and hoped against hope I'd be able to "run out" again for ten minutes within the next day or so, before all the blossoms disappeared.  Three days later, I was ever so pleased with myself because I was able to do so and even stick to my strict limit of ten minutes and no more.

And wouldn't you know it, but just as I laid down on the ground, hubby dearest arrived home - in the middle of the day, for just long enough to cut the grass and run back to work. This NEVER happens!  I was, simply put, BUSTED!   Fortunately, my red face made hubby refrain from lecturing, though since then every once in a while he mutters "ten minutes, huh?" -  just loud enough for me to hear.

My family laughs that my life is either "off" or "on," with no in between and I'm beginning to see that they are right.   "On" means going on for hours, though it rarely happens anymore.   But there are at least two reasons for this "on/off" phenomenon.

First, it is really hard to change gears with this DD, CFIDS, CFS, ME and/or fibromyalgia with all its complications including migraines, SEVERE insomnia, nausea, eye vision problems, falling down, ulcers in the mouth which often make it impossible to even swallow water, speech impairment, memory loss that is more like amnesia than just bad memory, swollen lumpy nodes.  When you are finally well enough - angels singing Hallelujah! - to take a bath you then stay in way too long and pay for that for the next few weeks - if you're lucky.  When you're lucky enough to start to wash your face you start with soap, then a cleanser, then an exfoliant, then throw in a facial mask treatment for good measure and keep going because who knows when you'll be able to wash your face again?  You start a book and just can't put it down - because you can't change gears and because tomorrow you won't remember anything read the day before.  You play a mind game and force yourself to dust and declutter your nightstand and soon you're dusting everything in sight.  Your adrenaline has kicked in to assist the painkillers and if they happen to FINALLY work and vertigo doesn't start in, nausea, along with a dozen other possibilities, you become unstoppable.

Your cautious, "know-it-all" mind tells you to stop because IT knows perfectly well the price that will be paid, but your brain is damaged and can't turn off. If someone interrupts,something weird happens to your head, your blood sugar, your momentum and you are startled so badly that a migraine starts. The crazy list goes on and on, of examples and consequences.

Secondly, I've learned that pacing myself simply doesn't work - for me, that is.   Everyone is different.  It really doesn't matter if I spend five minutes doing something or five hours doing something - the end result is the same - and that is, that you'll always be in worse shape the next day or the third day after, for however long the fates have slated, I suppose.  That is why I so often go "all out" if I can manage to drag my body out of bed. And as long as I'm not standing still (because my BP plummets even lower and very quickly) but moving or sitting down on a stool I keep inching along - I become the Tasmanian devil.

I rarely disclose any of this because...drum roll, please...I am sick and tired of the "advice" I get from people who really have no clue, including doctors, about how I need to learn to pace myself, or I must make an effort to push myself,or I must learn how to NOT push myself, etc.  I rarely hear what I need to hear, what pretty much all of us need to hear: listen to your body and LEARN FROM YOUR BODY what's best for you.

So, getting back to my capturing pictures of my garden, I did the mature thing and took 10 minutes worth, washed off and got back into bed.

But now I'm too exhausted and in too much fibro pain, shaking, fighting off a migraine, with blues that are felt down to my very ankles from the awfulness I feel, unable to understand the simple concept of even how to wash my hands with Dove, much less wash my face. There are other symptoms which I'm not really registering, being so good about denial.  Pain killers are no help.  This is disheartening because washing my face at least once a day is one of my New Year's resolutions and I'm doing the best I've done in at least 15 years.  I'm ticked off that I didn't work out there until I dropped.   At least something would gotten accomplished - more than neighbors seeing the mystery woman ambulances appear for every once in a while. (LOL!??)

However, now my thighs are killing me too and I'm LOVING that!  This is the thing to have happened to me in ages:  the wonderful hurt a normal person gets after a period of slacking off and then doing a good work-out. It hurts but it's the "good" kind of hurt that I remember from 37 years ago, which so rarely happens anymore.  And who knows...I might even be able to add riding on my exercise bike for two minutes every few days soon.  I've still not given up my dream of going back to taking very elementary horseback riding lessons, though I fear I've jinxed myself by revealing that dream here. (And yes, of course I've knocked on wood and done the "Tphoo! Tphoo! Tphoo!" bit. I'm a supertitious Russian/Ukie by blood after all!)   But I am definitely going to TRY to keep up my attempt to record my garden's progression.   We all do so much better when pretty things surround us and we all feel much better when we see that we've actually achieved or accomplished something, be we sick OR healthy.  I know, clichés, but true and very well worth keeping in mind.

Happy Spring, everyone,
Upa (aka "Ира")


  1. I absolutely love the way you write! I also love the introductory pictures you put up on this blog. It's ABOUT TIME someone with this disease is putting a real life perspective of it out there for people to learn about. Very nicely done...I hope you can continue this for a long time. Until the next post....I can't wait to see what's next!!!! Keep up the great work.

    1. Thank you, 347. I hope you don't mind the new nickname but my number skills are a TAD compromised!;)

      How wonderful to hear that you're enjoying the pictures as well as the posts. Your words mean so very much to me because they say exactly what I'm hoping to achieve. Your encouragement means the world to me. Thanks so much!!!


  2. When I read this 'Adrenaline Surges' popped into my head. I know the feeling all too well. Sometimes I think I might come across as if I am high on drugs.

    You should check out this blog post on Adrenaline Surges on a blog called 'Life as we know it':


  3. Oh my, yes. The adrenaline which I always used to run on in order to raise my three kids, seeming to come to in emergencies. Thanks, Treya. I looked at the post and so much resonates. And I know exactly how you feel about the "high" that you are afraid others are seeing which is really not a" high," but no other word seems to exist to explain it either. I looked at the post and appreciate it. Hope you are doing better today!