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.

Monday, August 20, 2012

My First CFIDS/ME Triumph

First day of school for all three munchkins: do they look capable of doing funny things with the lunches packed for them?  (YES!)

Ahh!  It's another challenging time of year for most parents and most especially for most of us in the CFIDS/ME/fibro community.  Today is the first day back to school for many.  As is usual in this country, some parts have started, while in other parts it's only the teachers who are going back and it'll be a few more days before those fresh faces show up, some eager, some not so much.

Each year was different for me too.   Some years I loved going back to school: I loved the cleaning of the slate and starting with the new notebooks, the new pens and pencils. Other years, weren't quite so much fun.  As a mom, once my health started to really interfere substantially with the running of my "self" and I needed to suddenly buy all those new things for my kids and was already having a hard time just getting those kids off to school each day, making dinner each night, plus doing the laundry and the trillion other things a mom does each day while trying to be perky: it was really hard to do it all with my ever-increasing migraines, my unpredictable hours because of the severe insomnia that was really getting out of control, the brain fog getting worse all the time, etc., etc.  (Ahem: back to Happy, Happy, Happy!)

To defeat this every-growing CFIDS/ME/fibromyalgia monster, I started to try to think of tricks that would help me get through each day: my life was turning into one where I was living hour by hour - day by day would have a been a lifesaver, too much to ask for anymore.

So, here are a couple of those tips that I can jot down for anyone needing them, ending with my best one - the game changer - for last:
  • First: I organized each outfit for each child in each child's closet by day, with an 8 day supply.  For my daughter, for example, I'd hang out her dresses or OshKosh B'Gosh overalls with cute top to go with it, with the shoes and socks in a box under the clothing rack.  Each day had a plastic ring that I attached to the rod and on it was the day of the week the outfit was to be worn.  To make it more fun, my kids and I would periodically go over what was to to be worn, so that I didn't appear to be such a dictator.  Of course, there was one period when my daughter did decide she was going to dress the way SHE wanted: I let EVERYONE know that what she was wearing was not my choice and was so surprised to find out that everyone with a child my daughter's age already knew it because they'd gone through the same horrific stage.  Misery does love company.
  • Secondly: Watch what your kids are doing with their lunches!  I admit it: the kids had a couple of years where they had the most atrocious lunches because hubby was in charge of them and I was too far gone to have done anything about them.  We even got a letter from the school saying, "can you please send nourishing food in the kids' lunches?" at a time when no one worried about fast foods and how bad they were for you, but I had always been a "food nut."  We were puzzled.  Yes, the lunches that the kids went out the door with were bad, but not bad enough to warrant a letter from the school where real crud was served: pizza, tacos, etc, on the days that the school mom volunteers tried to do a once-a-week hot lunch.  Well, we've been learning in the past few years exactly what had been going on: apples that were hidden and recycled each day is just one example.  Further I refuse to go (ie, listen to the kids brag about the scams they pulled over our eyes) as the pictures that the "kids" now start to tell me brings out despair and nausea or just make me want to go into a coma, never to get out again.  It's all a matter of "whaaaaaaaat??????" Scary stuff.
  • Finally, don't feel as if you have to sign up for everything that the other parents sign up for.  I found it hypocritical that at one PTA meeting, the school told us about the new program that they were teaching the kids, DARE.  (Oh, this so dates me: it was during the REAGAN years if I'm not mistaken!)  It was, essentially, to teach the kids to not give into peer pressure to say "yes" to drugs, teaching them that for many reasons they should dare to say "no."  All of this was happening while a bunch of sign-up sheets were going around and the parents were essentially being bullied to sign up for every activity from that day to the end of the year as a volunteer.  And mind you, the peer pressure was ENORMOUS

Well, it was one of those days where I had run myself ragged already with carpooling, running a million errands during the day and had really pushed myself to make it to the PTA meeting at all, where, for some ODD reason, I thought we would hear about the school plans (like DARE) for the year, what was expected of the kids that year, the school philosophy, yada, yada.  Instead it was all a con game to get those of us gullible/stupid enough to attend to sign up for baking, baking and more baking as well as volunteering to paint the backgrounds for school plays, fairs - we're talking HARD CORE and NO, bought cookies, cakes, etc., were NOT acceptable.  Finally, I'd had enough and stood up and gave everyone there a piece of my mind, saying as diplomatically as possible that the whole thing was hypocritical. 

How, I wanted to know, were we to expect our kids to withstand the pressure of drugs from their so-called friends if our so-called friends were coercing us to sign up for things that we were certainly not able to fulfill?  Furthermore, the kids were not stupid, they would overhear parents complaining about how we HAD to sign up for this and that: we were giving them an example right at home about how hard it is to withstand peer pressure - and we were failing miserably.

The parents and those talking at the head of the library were silent and then after an uncomfortable few minutes, the meeting continued, as if nothing had happened, the sheets continued to be passed along.  Hubby was shocked at my ability to stand up for myself for perhaps the first time in my life in front of a bunch of strangers, in a very exclusive school where both parents worked, the moms lawyers, doctors and such at a time when this was still an unusual thing to do for females.

Well, after the meeting, outside the library, a bunch of parents came up to hubby and me and told us how happy they were that I had spoken up.  I should have been triumphant.  I should have been happy.  Instead I was disgusted with the parents, said something short and sweet to the various parents (like: would have been nice to have had someone agree with me in a lighted room instead in a dark outside area!) and left hubby to deal with the the cowards.

It was one of my finest moments! 

And I did end up volunteering, the way I wanted to, on my own terms, and in the end putting in more hours than many.  Every Friday I would take the 3rd graders in for library hour.  As I became more comfortable with the teacher and she became a lifelong friend, I even ended up spending most of the day helping her out.  But it was my decision, something *I* wanted to do, not something the PTA had forced me to do, a big difference.

So, you see CFIDS/ME/fibro HAS been good for me in some ways: it gave me a backbone and made me realize that I can stand up for myself and it gave me the imagination to volunteer on my terms, not those dictated by MY peers.  It's a good thing to keep in mind as those of you out there go out to a brave new year.

Anyway, I certainly hope everyone's feeling their best, only better!!!  

And at the risk of sounding like the PTA: The Followers Giveaway will be on noon Friday the 24th (New York time).  To get a chance to win, please go to this post and register.  It's all really very easy and will take just a few moments!   Remember I'll mail the winner the beautiful Skyn Iceland kit anywhere in the world that the post office goes!  


  1. Really good post for today. Good tips and a really good lesson and reminder to someone who always has a problem saying "no" to people! This is especially true as a follow up to your health post a few days ago.

    1. Reminder: yes! I still have trouble saying no. I'll say it if I have to and then SUFFER! I guess not suffering over it is the next step? Thanks! xx