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.

Friday, July 5, 2013

Friday Tidbits: Walking Into Doors?

It's a good thing that I started this post the other day because I forgot that today is Friday and there was simply no energy for "Friday Tidbits" last night.  I worked on this earlier but I'm not sure I've reworked it enough to hit "publish."  But since I'm not inspired into writing anything any better... well, you'll see!  (Eek!)

Each three-day weekend brings the same thing: I have such wonderful visions of getting things done.  OK, I realize this July 4th wasn't exactly a three-day weekend, what with Friday being a work day, but close enough. I always envision wonderful developments of putting the house closer to what it should look like - you know, less of the "Green Acres" look, in the midst of remodeling, etc., going on.

And in many ways it's not an unattainable goal.  The latest development, after all, is that I'm no longer falling out of bed, something that had become such an annoyance and just a bit of a dangerous phase that I went through in the past year - just a tad "inconvenient," you know.  It had become such a regular "thing" that I wasn't surprised any longer when I found myself on the floor at the foot of the bed, or on the bathroom floor. However, now that the falling nonsense is out of the way, I find myself walking into walls, or, more specifically, walking into door frames, misjudging how wide open the door actually is.   

OK.  That sounds crazy but when we redid "my" bathroom (going as "handicap-friendly" and as "handicap-accessible" as possible) we thought a pocket door would work so very nicely.  Somehow, a pocket door seemed a bit easier to navigate than a regular door.  (I know: how silly!) 

What I hadn't counted on is one of the (many) contraditory natures of our CFIDS/CFS/ME and fibromyaglia. On the one hand we have such a lack of muscle memory and on the other hand we really depend on it. 

Indeed, I'd given up on muscle memory. I simply didn't realize how dependent we still are on some part of the brain, the one that's  considered to house "muscle memory."  It accounts for many things - like walking?

But it's when you come to more complicated matters that you realize that your muscle memory is impaired. You put down the TV clicker and when you need it a minute later, you can't find it.  You put your cell phone aside and then can't find that darned thing.  The other day, after hubs and I searched for my cell phone entirely too long, I said, after getting monstrously discouraged, "those were words I never imagined using when I was growing  up: saying 'where is the darn phone?'" There are only about seven items on or next to my bed - literally - and I am constantly hunting for them, including two pairs of glasses, one for reading and one for distance (don't ask!).  They almost never leave the room because *I* so rarely leave my room.   

And so bearing the constant hunts for everything, I had no idea how much muscle memory was involved in navigating my living area, the bed and bath.  Everything is off.  For example, I can no longer tell if I'm waking up in the morning or in the evening.  The way the sun comes through the windows from the bathroom into my room is completely off.  The outside noises coming through the windows I now hear are off.  The walking distances are off.  And that means that the pocket door is usually only 3/4 open and I misjudge and walk into the door frame.  Misjudging everything has become a pain in the patookie.  

Some days it's just too much, this hunt for everything, the navigating.  After much hollering the other day (to myself: I was, after all, alone in the house) I realized that most people do not spend half of their "awake time" looking for things.  Nor do they spend the other half of their time annoyed with the fact that they'd just spent all that time hunting for lost items because they weren't put away in the right place.  I used to say to the kids - as well as to hubs - "if I were blind, I wouldn't have this problem because you'd all agree that we needed a place for everything and everything in its place."  Can we say, "deaf ears?"  Lately, I've given up on that battle.

Which leads me into saying that one of the reasons I look forward to three-day weekends is because I keep hoping that I'll be able to get a massive amount of work done in the house - because hubs will be here for me to hand him the list that he can start doing and crossing off the "honey do" list.  (See that list up top?  I actually gave him one that long once and he still has it - as a "souvenir"!)

A few days ago, I misjudged the narrow door entrance (the now "infamous" pocket door) and went Whack! into the door frame, bruising and then scraping my shoulder in the process.  A couple of nights ago I walked into the same door frame and hit it so hard that it may have cracked one of the bones in my "ring" toe, leaving a very painful and completely swollen toe.  (How can such a small toe hurt soo much and incapacitate you?)

Where is my brain?  Where is that muscle memory that judges your steps and that calculator in your (so-called) brain - the one which keeps you from walking into doors and walls, from automatically reaching for things which should be in a certain spot but aren't because your brain was too "fibro'd" with other matters to register what you're doing?

So because of a dumb toe there's another "holiday" when I won't get a bunch of things done that I'd hoped to. It sort of reminds me of "for want of a nail, a kingdom was lost." 

But I tell myself that though the 4th was spent in a bit of pain and I wasn't able to get anything off that "honey do" list, the weekend still remains.  This may be (probably is!) convoluted thinking but if I look at the 4th as the day that would have been the Saturday of a normal weekend, then I'm still a day ahead!  

Hey!  I'm just trying to make lemonade out of lemons!  My optimistic self says that perhaps we'll have been able to indeed do a huge bit of decluttering, putting things away into newly-designated spots.  This will indeed be the magic weekend we can get things done.  And who knows, perhaps I'll be able to find the couple of pairs of flip flops that have gotten lost in the moves from one room to another and which I desperately need now that my toe is swollen into a mushroom-like growth.  (Yuck!  That sounds really gross!)

Besides, emailing my BFF and talking to her on the phone was worth it all today.  In true BFF fashion, it turns out that she messed up her ankle yesterday - thus showing what parallel lives we lead. 

So until next time, stay safe, everyone.  I hope everyone's feeling their very best - only better.  Ciao and paka! 

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  1. You're ME! I have bruises on my inner upper arms, shins, hips, etc. I walk into the same things over and over. I see the corner of the desk or table, the door knob...and yet I'm drawn to it like there's some sort of magnetic attraction. I've always been a klutz (I rode my bike into a parked car when I was little) but, this is a whole different animal. I also constantly drop things because I misjudge counters. I don't know if it's a problem with depth perception. I'd really like if some neurologist would just flat-out say (and the NIH would agree) that the Fibro brain is damaged. It's not just our defective nervous system - something is definitely off with our brains. Yes, lack of proper amount of REM sleep can cause verbal & memory deficiencies. But, what we experience is something beyond that.