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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.

Tuesday, September 24, 2013

The Mary Tyler Moore Show

Before

Now what in the world could Mary Tyler Moore (aka Mary Richards for those who remember that iconic show) have to do with anyone who suffers from CFIDS/ME/CFS and/or Fibromyalgia, not to mention another couple of dozens of "invisible" and debilitating illnesses?  Well, bear with me and you'll find out - I hope!

As I wrote yesterday, I'm now living through the second scariest and most agonizing period of my entire life. Number 1 was, without a doubt, when we went through my daughter's ordeals for two years.  She had more near-death experiences than anyone should.  Now I'm living the 2nd worst time of my life.  In case you've forgotten (and who could blame you with fibro-brain going on?) I'm living through the scariest time in my life, from the CFIDS/ME/CFS and Fibromyalgia and all the complications involved, but also in just about every aspect in my life that I can think of.  As I mentioned before, in missing about five weeks of posting, y'all have missed out on a whole bunch of "good stuff."  Of course that depends on how desperately you want to know what's been going on.  (And I do so hope someone cares!)

It's amazing what people know about you and what they don't know.  My daughter was over a few days ago, bringing over some liquid detergent.  I'd run out of two and a half large bottles in about three days.  Daughter was a bit surprised that I was able to do the laundry, especially so much.  

Well.... blow me down!  She, who knows me pretty well, never knew about this quirk of mine.  There are two tells: one is pretty obvious.  When things get bad my green eyes turn blue.  When I get REALLY really angry, I am a cleaning fiend.  Combine that with....

OK.  Where's Mary Richards in all of this?  We need to go back to 1970 and thereabouts.

In college we would sit in the corridor huddled around a tiny TV to watch this amazing show of the woman we all wanted to be.  We wanted careers like Mary had, not the stuff that women were forced to do.  To put you into the era, my entering class was the second one to officially admit females.  The school had to "refurbish" a second dorm for us, evidently very quickly, running out of precious time.  How do I know this?  Well, when we arrived, all fresh, bright and bushy-tailed, we discovered that our huge bathroom had urinals in them (now THAT was interesting since I'd never seen one before!) and gang showers with no shower curtains.  (Try being big-breasted!  Those endowed tried to take 3AM showers for a smaller audience.)  

So, I hope that sets up the picture. Mary Richard was beautiful.  She had the perfect clothes, she had the perfect job, she had it all.  We all desperately wanted to grow up and be her.

During one episode Mary (the one in the TV, not any old Mary hunched on the floor of the hall) was upset about something, and it was a BIG upset.  Either Rhoda or Phyllis made a comment that when Mary gets upset she starts cleaning.  I loved the line and really never gave it another thought. 

So, back to the new age and the new decade.  My daughter comes over to the house and sees that there are a lot of things going on, but especially laundry.  At first I didn't understand why she was so surprised and didn't even give it a second thought.  But then my daughter said a few things that amounted to "I'm so glad you're taking this all so well and that you look good," yada, yada, yada.  

What?  Are you kidding me? In what world am I taking this well?  In what way could all this manic cleaning be a good thing?  

What no one's ever truly realized is that if I'm in a lot of pain I wash floors, cook, bake. They were "sort of" used to that premise though not really, if you know what I mean.  I've been doing this sort of diversionary thing since I was a little kid.  In fact, my mom would say, "children do not get headaches, they cause them." What's a kid to do?  So, I found coping mechanisms along the way. With child #2 I went blind in one eye for a couple of days and a neuro-ophthalmologist  (a rarity even in NYC in those days) told me it was a classic "migraine equivalent."  For the debate on that, this link re migraines will tell you about that little adventure.  

The neuro-ophthalmologist was amazed at my "diversion" tactics.  I can handle a LOT of pain.  Not bragging, just the truth.  In fact, when I see a new doctor, it's hubs or one of the kids who "squeal" that I can withstand huge amounts of pain. I feel like everyone says that and so I don't go there and am embarrassed when said family butts in with this bit of info. 

So, pain I can't tolerate: SPARKLING floors that a baby could eat off of.  Really.  (In fact we need a new kitchen floor and that isn't driving me nuts ONLY because I am at the end of my ropes in this awful stuff that's going on around me!)  

So my poor daughter sees that I'm doing laundry - I love doing laundry and rarely get to do it any longer - and thinks, "mom is doing so well!"   Oh, you little amateur, my baby. You know your mom not quite as well as you thought.  (Can I a put a "huh!" in there without sounding too petty?)  

You see, when I go ballistic, and I mean when it's a rage, sadness, fear, feeling that your own family doesn't understand, unbearable pain that's at the magnitude of a definite 10 but you want to say it's a 20, when I'm completely off the wall in pain with nothing helping me at all, I start cleaning walls, mirrors, play jack-in-the-box (popping in and out of bed, falling half the time), that means that you really do NOT want to mess with me. I'm using all my diversionary tactics.

I've always had a "thing" about cleanliness.  Up until I became a baby factory, I used to take three showers a day: in the morning to wake up and get all that filthy, disgusting dirt that you just know I picked up from the sheets that I just slept on (which were changed every other day), a second shower once home from outside (can't blame me for that!) and a final (number three in case you've lost count), to make sure I'm going to bed clean because it felt so good.  

I vacuumed a not small house every single day, even when I was overdue for baby deliveries, while my mom would practically have a heart attack that I was doing such disgusting things. She also thought it completely immodest and perhaps immoral to be out in public once I was about 6 months pregnant. Yes, it WAS a different world!

So, I had to explain to my daughter how this works.  

Thus far, every pillow in the house has been washed.  That's four beds with at least 4-6 pillows on each bed but for the twin bed with only three pillows but lets not forget the "extra pillows" for when you need different pillow(s) for who knows WHAT reason!  The down ones need to go to the cleaners but I need someone to take them. I have washed every single pillowcase, pillow cover, sheet, duvet cover.  I've washed almost every T-shirt, leggings, nightgown, pajamas and any other article of clothing you can imagine but for the ones that need the cleaners. 

I'm now into the many, many tablecloths and cloth napkins.  (I'm crazy in setting a great-looking table....we all have our vices, admit it!  Come on... it only hurts the first time!)

I've emptied out closets.  I'm organizing jewelry.  I'm organizing makeup (how embarrassing...lipstick story is for another day!!!).  

I'm throwing things out right and left.  Of course, only after enough suffering on making that decision.  It doesn't get thrown out if there isn't enough ANGST.  I do have an excuse for that, however: I am deficient in the "throw things out" gene.  I always throw things out that I end up needing.  I'm still grieving about a purse I threw out twenty five years ago! Yes, yes, I know it's time to get over it, but..... try to see it from my side! PLEASE! (LOL!)

Today daughter stopped by to tell me that she's too tired for Dancing with the Stars and could we hold off another day (tomorrow) to watch it?

And she STILL doesn't understand the premise here.  I am royally upset, ticked, afraid, sick and so many, many other things that only a bucketful of miracles and prayers can turn things around.  And yes, my friends here, on Facebook and on Twitter... I am so very much indebted to you.  Never let anyone tell you that Twitter is a waste of time.  Not only have I made some really wonderful friends here but the support has been incredible (to be gone into at a later date.)

So, as a tease I will write down what I plan to cover, if I can get the "energy" for it:
  • Yesterday I couldn't take it with the gardening and will report on that front for all the spoonies out there who love gardening but have had this pleasure taken away from them due to stupid illnesses.
  • I plan to write about the 'diet" (way of eating) as requested by a few people on twitter.  I've been putting it off because I barely know where to start but it's the right time for it now... if only I can get my head around it.
  • There were the insane ER visits a couple of weeks ago that have got to be heard because this is hitting not just in my geographical area but is taking place all over the US and it's frightening. 

And so daughter understands me a bit better now.  You can't blame her for not knowing this.  How often does this cleaning diversion take place to the laundry and closet level?  If we're lucky, it's about once every few years.  But you get to the point that all the pains going on in your life get to be too much and nothing, other than prayer, helps to get over things as well because a clean, decluttered, organized home ... there are just very few things that make you feel truly at peace.  It's such a small thing, you would think.  But it's incredibly healing.  For those of us sick with the DD, only when you get enough of an adrenaline rush can anything like this be accomplished - at least for me.

Now someone take me out to the back of a barn somewhere and just shoot me!  Talk about pain and paying back for all the stuff I'm doing.  Sometimes you just have a no-win situation.  Rest and the pain is intolerable.  Do something to distract from the pain and you pay in spades.  What's a person to do?  Work on until you drop is my most recent motto because it won't last and at least I'll get something out of it in the end.... or so I hope! 

As always, I hope everyone's doing their very best - only better!  Ciao and paka.


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5 comments:

  1. Dear Irene,

    Welcome back! So sorry to hear how things have been for you. I was hoping against hope that you would be ok when you weren't able to post. Discovered your blog recently through Ruth's AMR and have been slowly reading though it, brain permitting! Thank you for making me feel sane and for making me laugh. I found what you wrote on your last blog especially comforting, that no matter where in the world we are there is someone who understands how it is. I thought I would leave you with the words from Emily Dickinson's poem, "Hope is the thing with feathers that perches in the soul, and sings the song without the words, and never stops at all..." Look forward to your next post when you are up to it. Take care, Alpa

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    1. Hi Alpa. Sorry for my delayed response. Belated replies are becoming the norm, unfortunate. ;)
      Thanks so much for your lovely comments. They do SO much good!
      Yes, I love Ruth and tho she most probably has no idea (ok, we ARE sure she has no idea!) it was reading her blog which set me on this path. I didn't know what a blog was and am not sure how I stumbled onto her beauty (and more) site but am glad I did!
      But mostly I am feeling great things knowing I may have helped you and gave you a laugh. And the beauty of old Emily seems to be that she always has something that applies, so thanks yet again! xx

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  2. I am so glad that you are back. Hooray!

    Your fan and admirer.

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    1. Thanks, Anon! It's wonderful to read those words! xx

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  3. Hi Irene. Thanks so much for writing and for the quick response, which wasn't delayed at all. Please don't be so hard on yourself. I promise not to tell Ruth that you love her although I did read it on your blog! I'm also glad I stumbled onto her blog and then yours and Jeanette's. You may not have known what a blog was but you have done your own blog so well. You have also helped more that you know just by getting how it really is to have ME or as you say, this DD. If you ever need a spare ear or to rant you're welcome to contact me directly. I think you are doing amazingly well with all you have been going though. Take care, Alpa xx

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