About Me

My photo
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


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.

(Did you enjoy this post?  Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)

Monday, September 23, 2013


I managed to go outside for a few minutes the other day and these are the roses that were still hanging in there.

Hi y'all.  Yes, I'm baaaack - well, sort of.  As many of you have suspected, I've had problems galore, health issues, in some ways just about every sort of issue you can imagine.  I can honestly say that this is the second worst "period" of my life.  Understand, I'm so old that I was in high school when man landed on the moon.... a very LONG time ago indeed!  This is such an awful period that there is no choosing "was this the worse or was that the worse?"  No. This is the 2nd worst thing by a country mile. Period.

Now here's something to fear in a haha way.  I have had some wild "adventures" while I was gone: like ER insanity and so forth.  In fact, so much has has happened to me in the past five weeks that I feel as if I have enough material to write posts for at least a month.  Well, a month-full if I didn't forget so much and could muster up the energy. ;)

I also know that I need to get back on that horse of mine (metaphorically speaking, of course - I don't actually own a horse) and just start writing.  In the part of my brain that isn't full of fear and despair I know that life goes on or it doesn't, all dependent on fate or on a Higher Power.

(Pretend there's a transition here, please!)  

I must thank my readers here for all the support I've received.  I've only ventured to twitter a few times (missing everyone!) and have been  brought to tears for all the support and kindness I've received from quite a few of my twitter family.  Thanks so much.  Your words of encouragement, support, just letting me know you're out there PLUS the many prayers I've received have been more helpful than anyone would believe.  I hope no one ever has to go through such grief.  I still need many miracles but I don't see it happening.

So, thank you blog world, ipad, computers, email and the other social media out there.

If we had to have the DD: CFIDS/CFS/ME and/or fibromyalgia, we've gotten this monster at a pretty good time. We have:

  • medications that help somewhat
  • no matter what the time or day, there's always someone on the other side of your state, country, continent, who is there.  We can cry, we can act silly.  But we also have those who understand this the hard way.
  • We have friends who've come back into our lives after decades and they have been so supportive. (I have GOT to think of another word for "supportive"!)

I want to and am so tempted to write a list of names to thank those who've been here on this blog (and had the energy/courage to makes comments here), on Facebook and on twitter but there are so many and I'm so afraid that I'll leave someone out.  But please know that you are in me and you are helping to alleviate what I'm going through a bit.  It all adds up in the end and you hope and pray that it's enough.  I'm way behind in my connecting with those who were and are there for me and ask you to bear with me.  

Finally, I'm taking one day at a time.  I'm still falling.  In fact, I just fell off my chair about 5 minutes ago, misjudging where the chair was.  Good thing I love my bathroom floor - generally speaking.  We've got the beginnings of a beautiful friendship.  In human terms I'd say that bathroom floor and I are going steady and who knows where that could lead!

At any rate, I'm still living with a migraine (both head and body migraines) that won't leave me, the orthostatic intolerance is almost unbearable, the eyes are doing weird things to me, the myoclonus is almost out of control.  Oh good grief.  We can be here all night if I start listing just some of my "minor problems," so I'm calling it a "day." 

Fear not: there are a few laughs coming up in future posts.  Just working hard to make that lemonade, folks.

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

(Did you enjoy this post?  Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)