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, December 9, 2012

Auto-Pilot and Muscle Memory

Our bodies are hardwired to have two subconscious things working within us so that we're able to go about our business each day with a minimum of effort.  For example, we breathe, but are we aware of normal breathing?  We notice how we breathe when we become ill with pneumonia or just the common cold.  When we walk, for the most part we just do it.  We put one foot in front of the other, aiming our bodies in the right direction. Rarely do we need to think about the many tiny steps which we take each day. There are most probably thousands, if not millions, of little things that our body performs each day (cell turnover on your face comes to mind) which we are blissfully unaware of until something goes wrong: as in pneumonia, a broken foot or the wrinkles we acquire as we age.  But does this hold true for the CFIDS/ME/CFS and/or fibromyalgia patient?

Let me set up a small scenario for you.  Bear with me: I think it'll be worth your time - I hope! I may write posts that are a bit long, but remember, it's always for the greater good. (Smiley face with halo over it, that's me!)

My typical day is spent in bed, 24/7, with the usual outing to the bathroom, and the a few trips into my closet or the room off the bedroom where my frightening PC sits - my frenemy - ready to frustrate my life even further because I just don't along with the darn thing.  But for the most part, everything I use is within feet of me, literally, on my bed or nightstand.

However, I spend and waste at least hours each day looking for things that I can't find. Forget about the big expedition such as looking for a certain book or picture: those are acceptable hunts at this point because our house is in such disarray.   I'm talking about the little things like my glasses, the TV remote, my iPad, the iPhone, the one thin sweater that has such a nice quality of cotton that it's one of the few things I can wear without my skin protesting.

So, this is my what my days consist of: I'll suddenly pop up in bed, like a jack-in-the-box, realizing that my glasses are missing - distance or reading; I have two pairs that make life a little bit more exciting.  So I jump out of bed, a bad idea because I've forgotten for the billionth time that I should get out of bed slowly if I don't want to pass out or just fall.  I've already gone through my comforter and the glasses are not there, but the other necessities are: the clicker, the cell, the iPads, etc.  Trust me, they won't stay there too long.  As soon as I need those things they will have magically disappeared as well.

I walk to the bathroom, look around vaguely and then go back to bed.  Less than two seconds pass and I pop up out of bed, look around and then return to bed.  Less then two seconds go by and I pop up out of bed again and... Well, you get the picture.  Hubs finds this all extremely amusing. (The creep!)

He'll say, "What are you looking for?" and he knows the answer: I don't remember.

"Is it your distance glasses?" the clue being that we are watching TV and I'd like to NOT stain my eyes for fear of a migraine coming on.

"Would you like for me to look for them?" he'll say overly-kindly, at which point I give him a dirty look because he is enjoying this vaudeville act he's getting for free and at home. (Insufferable ".....": you can add your own word here.)

The hunt is back on but with the memory and attention span of a gnat, I keep forgetting what it IS that I'm looking for.  I just hope that when I see it, I'll recognize it, but by then, of course, I've lost something else and a new search is on.  And this sort of scenario plays itself out countless times a day, with hubs usually finding what I'm looking for since he has a freakishly great memory (knock on wood!).

So, in our house, which is at its worst because of the non-stop lists of things that need to be done, I live the life of a scavenger.   I'm on a mission to get rid of as many things which we don't need any longer.  But in full disclosure, it's not I who do the decluttering, but it's hubs.  I just point him in the right direction, figuratively speaking, and tell him to come back when he's come up with, say, 30 items to be given away or thrown away.

But getting back to my unsuccessful wanderings.  In the last few weeks I've been wondering why this continues to happen and why it seems to be getting worse.    After all, we can't blame everything on remodeling!

Well, I suddenly realized that my auto-pilot and muscle memory are completely and totally shot.

How often during the day do we move something from one place to another and when that "thing" is needed, we go straight to where we moved it?    It's right where our auto-pilot or muscle memory remembers where it is and we go about our business like this dozens, if not hundreds, of times a day.

So, when I put down my glasses, my brain should remember where I put them, or if I put the TV remote next to me on the right side, I should "remember" that that remote was put on my right side and my hand should remember exactly where to go, not engaging a brain which has almost no short-term memory.

I can organize to my heart's content (theoretically speaking) but my brain no longer takes in where things should go, despite labels on so many things, like a drawer in the closet reading, "socks."

Putting my makeup on is a very long job because I need to think each step through, whereas even just twenty years ago, putting my makeup on would take no more than seven minutes, and that was "the works" with eyeliner, brows, eyeshadow, foundation etc, for a "no-makeup" look, which we all know takes longer than the heavy makeup look.

Whipping up a loaf of saffron bread was done in a jiffy, because the auto-pilot and muscle memory were there.  Now a simple carrot cake is a laborious effort.  Forget about trying new recipes: hubs might implode since he is trying so hard, but cooking is as foreign to him as remembering obscure historical dates or a statistical analysis would be to me.

So, what to do?  As mentioned above, I'm trying to label things as much as I can. Currently I'm furious with my plumber because I picked out fixtures which have hot and cold labels on the new faucets but he's "accidentally" forgotten to install the labels and I can't tell you how often I've burned my hands on extremely hot water, thinking I was turning on the cold water.

Various methods have been tried to organize my gadgets in a nice-looking box on my bed with compartments, so that I don't need to troll through my small area of my bedroom for nail clippers, lip balm, a pen and notebook, and so forth.  (Actually, the pens I've given up on: they are NEVER to be found.)  It was a failure because I could never remember to put those items into the box.

I did realize that the problem was lessened when we lived in the attic during the rip-apart-the-house stage of remodeling.  The nightstand up there had just the right-sized drawers, not too shallow, not too high, not too deep.  So, other than buying a new nightstand, I see little improvement in my future.  Yet, coping mechanisms which are needed for survival from day to day, that is - automatic pilot and muscle memory - are truly things of the past as far as my life is concerned.

Now if I could just stop my mini-excursions with all of the wandering about, which entertain hubs to no end.  Heavens, he'd die of boredom if my auto-pilot and muscle memory returned - we might get something productive done.  But, shhhhhhh!  Don't let hubs know: the show IS rather amusing, even to no-brain, no-energy, no-memory me.

To summarize, if you have a huge auto-pilot and muscle memory problem:
  • Use labels, generously.
  • Establish a place for everything and put everything in its place.
  • De-clutter: how can we find anything needed amongst all the things we THINK we need but really don't!
  • Plan each project or outing with perhaps a run-through (physically, if able; laid out, if too ill) a few days ahead of time in order to make your outing successful.
  • Try to get duplicates of necessities, for home and for purse.

What you do YOU think?   Do you agree with this analysis/theory?  Do you have any ideas to help any one of us out of this mess?

As always I hope everyone is enjoying their weekend, feeling their best, only better.  Ciao and paka.


  1. I've taken to telling my husband where I'm putting certain things when I put them down so he can remember for me. I don't leave my bed at all (and now have rails so I don't try to get out when I forget I can't walk, or roll out) but still things can disappear within minutes of me just having it.

    One of my care workers found the TiVo remote under the bed yesterday. I don't know how it got there :-P

    1. So sorry I've taken so long to respond, Danni. Thanks so much for writing in. Yes, telling hubs is what I try to do. Today we had a comedy here. Hubs blanched when he found out I'd removed my passport from my wallet. Long story. I played along for a bit but finally put him out of his misery and was able to show him the "hiding place" for it now. Yesterday I put a dose of pain med into a pillbox for my purse and it disappeared right in front of us and we can't find it. UGH!!!!! How does that happen? xx