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 20, 2012

Identifying Sensory Overload - and how to deal with it.

Even had I NOT been an organized person, going to 13 years of sleep-away summer camp would have ensured it.  Here hubby and I are passing the experience on to our kids.

Before I forget: I'd love it sooo very much if you could go to my Facebook page and 'like" it.  You don't even need to be enormously enamored of me: it's OK...just "like" it, PLEASE!  Of course I'm not sure why anyone wouldn't actually like it - huh?  Ha!)  But I do need at least 30 people who "like" it (that's hitting the big thumb next to the image where the photos "icon" is up top) in order for me to get any sorts of stats from Facebook! 
This is the link. 

Pretty please!  I hate to beg but have decided that I can handle it if it gives me an idea of the number of readers going through that site and will perhaps give me a better handle on what my readers really do want to know! :) Thank you, thank you, thank you to those of you who have already liked it and I'm sure wonderful things will happen to you if you do: Karma!   And tell your friends if you have many of them, which I'm sure you do!  OK...enough degrading of myself! ;)

Now onto the subject at hand, dealing with yet another aspect of CFIDS/ME, fibromyalgia and its other goodies.

Organization!  A decluttered house where there aren't too many items not needed, ridding my life of the things that don't serve a purpose.  These are the mighty and lofty ideas, desires and dreams I engage in these days:  well, if truth be told, I have actually done so for decades.  The crazy part is that I was actually BORN organized and one who decluttered, with the exception of the books in my life. (Would YOU throw out your friends? Aha! Point taken!) Everyone simply must have something that drives the partner in a marriage mad and these are pretty much the two biggies: the organization - hubby's downfall - and the house bursting at the seams because of books everywhere one turns, my downfall.  Oh, and photographs.  Oh, and the boxes my beauty products come in.  (See: I do like to be fair!)

But now that I live with my fibro-brain I find that organization is not just a help but is key, especially the older and sicker I become.  If there were only one thing that I could change about my family, "organization" and "decluttering" would probably be among my top picks.  It frustrates the heck out of me that no one seems to "get" just how much of a problem this is for me, how literally sick I get from the sensory over-load and how often I burst into tears from it - tears that lead to anger because I so detest them.  To me they are a signal of defeat and I absolutely cannot tolerate defeat: that's quite a slippery slope to doom as far as I am concerned.

When I do walk into my closet, for example, and see a mess, my brain short-circuits and I'm totally defeated.  To make things worse, with a mess I can't see what is right in front of me, big or tiny.  If things are moved around in the medicine cabinet, for example, or too many items have been stuffed into said medicine cabinet, I cannot for the life of me, literally, register that which is right in front of me because my brain fries.  Suddenly, nothing makes sense and I'm blinded.

I'm so adamant about the need for everything being in a proper place, and not having clutter, that I've used the "blind" analogy to my family for decades: I try to press upon them that were I blind, everyone in the family would KNOW that things need to have their assigned places and everything would actually be returned to its proper place, no one even questioning the necessity.  And yet, no one understands that I'm handicapped by messes and really and truly cannot see what I'm looking for if there is a mess.  Even on a "good" day this is a problem, but on a bad one?   It becomes a complete lost cause making me go downhill even further and faster.

The sensory overload not only triggers migraines, but in milder forms, more confusion, a sense of being overwhelmed and unlike the "old real Irene" who was almost manic for organization.  I now immediately start to shake, break out in a sweat, need to fight useless tears because several things happen: I can't begin to know how and where to start cleaning a mess, my body is too weak to clean up a mess and my brain can't even begin to understand where or how to start.  Imagine how frustrating this is to a person who, for example, used round plastic thingamabobs (much like the ones found in clothing department stores that are used for sizes) which I would slide on a rod of each child's closet and each thingamabob would be a marked stating the day of the week said outfit would be worn.  Oh, I wasn't a fanatic about it: the kids had choices, but there was always the system in place for most days.  Talk about cutting back on morning drama!  Each child had two weeks worth of outfits hung out for them.  It was survival: in order to be a half-way effective mom, I needed to keep things organized (each child was also color-coded with bins for shoes, school work, the toys that belonged to each child individually instead of them all as a group.)  

Furthermore, I resent the inordinate amount of time I waste each day to keep finding things all day long...and I'm talking about easy things such as the remote, cell phone and two pairs of glasses that keep getting lost in the bed linens!

Going one step further, when I get a migraine and need to take a med to smash that sucker out of oblivion, I often cannot even realize what needs to be done.

Many, many years ago, when my children were young, I once came down with a monster migraine while hubby was out of town.  Somehow I had the wits to call the kids' babysitter, a mother's helper almost, except that L started out with helping us when she was only 13 years old.  At that age and with my young "babies," I didn't leave her alone with the kids but she certainly spent a great deal of time at our house just helping me keep up with the three little rascals, playing with them in our tiny yard while I fixed dinner and so forth.

On this particular evening it was rather late to be calling anyone and I certainly didn't want her walking over to our house in the dark, yet I'm still not sure what it was that actually made me call her: it was just so out of character for me.  Yet there must have been something very off in my voice that made her realize that I was really sick.

"Are you having a migraine, Mrs. X?" she asked?  "Is your head hurting?"

I was too ill to answer and so by now 14/15-year old L kept on with, "Mrs. X.  You're having a migraine.  Walk to your bathroom.  Go to the mirror!  Are you walking to the bathroom?"

L commanded me through the paces of getting me to my migraine medication, knowing exactly where it was located in my bathroom, picturing in her mind where it was in my medicine cabinet, on which shelf, how many bottles from the end of which row, down to what that bottle looked like and how to open it.  

I've written before that back then the migraine medications were not especially effective, but the med I did take, thanks to our teen-aged L, was enough to keep me out of the hospital and my toddlers safe until hubby was due home.

If you need to convince your family or your roommate or whomever of the importance of keeping things organized, putting things back after they've been used, everything having its proper place, feel free to use my cautionary tale to drive home your point.  (However,  at the moment I feel like a fraud/failure writing this as our house is in such flux right now that NOTHING can be found nor are we even sure if we even own a lot of things any longer!  Darn you, remodeling!)

Just as a glare can trigger a migraine, so too can a brain short-circuited from seeing a mess.  Of course, the reverse is true too: nothing puts me in as good a mood as seeing a clean and decluttered room with everything in its place.  And in an emergency, having things in their place can be crucial.

On that day, L won her stripes and I never worried if I needed to leave the kids alone with a very mature 14/15-year old if I needed to run a quick errand.  We were all lucky to have L as our official babysitter as she grew up into a young lady who eventually left home to go to college and start her own family and when we see photographs of birthday parties she helped me manage from becoming total zoos and photographs in which we celebrated many other milestones of our lives, we remember her fondly.

Perhaps that should also be a tip: find yourself a L.  But I can tell you from experience, they are hard to come by!

And I am now going to go play one of my mind-games: I'm going to go directly back to my bed, but on the way I will put 10 things away.   I like the game, "The Power of Ten," since it's about the only way I can get anything at all done these days.  And since I had the audacity to write it down here, I must carry through!  Sometimes I think I'm my own worst enemy!

But to sum up:

  • Being organized is key to keeping you from totally going nuts.
  • Owning less rather than more is especially important to "our" lives and getting through them.
  • Everything in its place is a downright birthright - not to mention an important survival strategy.
  • Playing mind games that work for you gives a huge heads up.  (More on that in a later post!)

I hope everyone is feeling as well as can be, only better!  Happy weekend to all!


  1. Irene -
    I can see how you need organization and lack of clutter to help you stay on an even keel (as we sailors would say but that's another story). I, too, LOVE organization! One of my favorite things to do is to go through a closet (for example) and select items to go to charity or to the trashcan! I feel so much better then. As you said, it's a great feeling to look at a room or closet and see a beautiful lack of clutter! Everything in its place - wonderful!
    I also wish that you feel as well as possible (or better).

    1. Martha, oh how sweet the validation! Thank you. I'm going to have to come up with a few more "mind games" since the one I played on myself the other day, and "sort of" today, made me feel so good! Hope the heat wave in your area has diminished somewhat! xx

  2. Hiya,,,,
    People without our illnesses cannot begin to comprehend this issue. As a matter of fact I didn't realize what was wrong with me for a long time. It is difficult to imagine how a person could be paralyzed by disorganization. My family members have contributed to the disorganization. Moving in and out of my home, leaving their belongings with me until they need them again. One day I know I will be more organized, I pray for that day. Thank you for sharing.

    1. I'm so sorry for the situation but as you see I understand. Thanks for writing in and as you put it, "sharing." I always appreciate it because it always helps me so much. xx