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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.

Friday, July 19, 2013

Friday Tidbits: A "Mini-Flare"



I'm strongly considering changing the name of my blog since I find myself  "complaining" too much and not giving you enough laughs.  Really and truly, too often I feel that perhaps someone should report me to a blogging review board of some sort in order to turn me in for false advertising - or being guilty of a good old-fashioned "bait and switch."  

Yet be that as it may, I'm gonna do a bit of complainin' today.  However, I don't mean to put people in a cruddy mood.  Oh no, no, no!  Instead I hope that those reading this post will feel "lighter" about things when they hear that they're not alone out there.  You know.  It's the "misery loves company" cliché put to work.  

Last week I wrote about my orthostatic intolerance (OI) and POTS (postural orthostatic tachycardia syndrome, also known as postural tachycardia syndrome).  One reader tweeted me saying that she felt that this was the worst part of her fibromyalgia and I think that really, the OI/POTS mess is, indeed, one of the worst symptoms for me as well. 

This "mini-flare" I'm experiencing with the OI and POTS seems to be cyclical, brought on by stress.  I talked with my rheumy about this and he says that he sees this frequently in his practice. When it strikes, it's a monster. I mean I always have OI going on and have coping strategies, honed over the decades.  I remember that in my early years of being sick - before practically anyone had even heard of CFS/fibro - I used to say that I hate standing in line, to which hubs would joke, "who likes standing in line"?  

It took years to figure out that I didn't actually "hate" standing in line so much as I simply couldn't do it.  It was extremely taxing on my body as my changes in BP show: one set of numbers while lying down, dropping significantly when I sit and then dropping into almost dangerous numbers when standing up.  The heart rate changing significantly as well. Unfortunately, it took "forever" to realize this - after I'd fallen in all the best cities in the States and Europe, as hubs puts it.  Some people bring back souvenirs from their vacations; I bring back yet more stories of falls, including one at this link

I must say, I'm a bit frustrated.  I want to write about all the problems this OI and POTS has caused this week but I'm just too weak to get into it - and really, who cares?  But today when I finally bullied myself to get to the computer -  after all, I promised ages ago that come Friday, you'll "always" find a post here - I encountered a few problems.  It was hard to keep myself from gliding off the chair.  It was difficult to read - even a pitocin shot was finding it hard to coordinate my brain with my eyes.  I'm working through a haze on this post - you poor, poor reader.  Worse, I found it difficult to think straight, my brain is so overwhelmed by indescribable fatigue.  I also find that I'll stare at something, frozen for moments - another classic and annoying problem with CFS/FM.

I thought to grab hubs as he was about to run out the door and ask him to check my BP. It was a "strong" 84/50 while sitting at the computer.  (For newbies: that's not a good number!)  Why bother taking my BP? Because I always find it easier to deal with something when I know that it's not me being lazy.  There is comfort in knowing that I'm simply unable to walk around.  We didn't even bother to take my BP standing: too dangerous.

Back to what causes a body that already has OI and POTS to get ridiculously awful?  I mean I do have coping mechanisms for my regular OI and POTS.  Why this "mini-flare"?  

My rheumy said that no one really knows why but it can most definitely be associated with stress.  He used the term, "when your body is under siege," and said that just overdoing can trigger the OI and POTS.  With me, it happened very badly after getting my driver's license renewed back in April, which eventually contributed to my need of a lengthy hospitalization. This current flare was probably due to the dentist appointment last week. (And I need HOW many more appointments!  Just shoot me now!)

It's a funny thing too.  It can change moment to moment.  I can pop out of bed to retrieve something I need and no problem. Next time I want to retrieve something, as soon as I'm out of bed I lunge for the nearest surface because I'm suddenly drenched in sweat, about to hit the floor, heaving to get my breath, unable to breathe correctly for a pretty lengthy period of time.  

One night this past week I wanted to go downstairs to just get a peak at the decluttering project hubs has going (more on that in another post) and was fine going downstairs. When I turned around to go up the stairs, however, whatever bit of adrenaline I'd mustered up in order to see the "project" ran out and I had to crawl up the stairs.  After 10 minutes - in bed - of grasping for air, sweating like a penguin in Florida (I do think that penguins sweat under the right circumstances, no?) I thought to wake up hubs.  Can I say that the man can sleep through anything, including my melodramatic moments?  I don't remember what my BP was but it was so bad that he wouldn't go back to sleep for about an hour, monitoring me. 

So, this is where I am at the moment.  I'm not sure how much writing I can do while I'm in this "mini-flare." It's a bit much at the moment: trying to get the hypothyroidism under control and coping with what I hope is the last stage of detoxing the Cymbalta.  And really, these are tip-of-the-iceberg symptoms.  Ah, yes: never a dull moment!

And so as always, I hope everyone is doing their very best - only better!  Stay safe - and hydrated - with this monstrous heatwave we're having.  Ciao and paka! 



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