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.

Thursday, September 20, 2012

Life: "A Candle In the Wind"

Need anyone really say more?

The other day was such a particularly bittersweet day which reminded me of what I've lost and found since those weeks when I came down with the flu that led to my eventual debilitating CFIDS/ME/fibromyalgia back in 1975.  My daughter was able to go to the Elton John concert in our small hometown.  (What he was even doing in our tiny town I've YET to figure out!) I was thrilled to know that said daughter was able to make an Italian dinner for friends in her own home. I am, of course, still traumatized by her recent health crises, worried that teaching all day, then running to the store, running a few other errands, cooking a meal for guests and going to the concert would be too much for her, especially since we're all still trying to get over a bug that's going around.  I know that it'll take me a few years to see my daughter - ay! not to jinx her! - as returned to good health.  Her dad and I still always jump the moment the phone rings.

But the bittersweet part? I almost hate to write this because I feel as if I'm a rotten and selfish mom for saying anything at all, but Elton John DOES bring back so many memories, and! in the end, a bit of sadness too.

When I moved into my freshman dorm, I discovered, in addition to a lot of other things (ahem) a entire new range of music.  My tastes in high school had been more along the line of The Carpenters, though a very good friend did try to enlighten me with Simon and Garfunkle's "Bridge Over Troubled Waters" album, which, to my credit, I eventually wore out and have lost track as to how many versions I bought, including 8-track tapes!

But it was such an incredible surprise that one of my roommates not only loved music, but had an elaborate stereo system.  Yes, that admission of a "stereo system" DOES date me - if the "8-track tape" thing hadn't already!  What dates me even further is the collection of albums (ay! yes, vinyl round records - some of you might need to look all this up on Wikipedia!).  She had The Who's "Tommy" album and Santana's "Abraxas" album, among other gems.

We were a generation surrounded by great music, which started in the late '50's and culminated in the mid-70's and it was yet another reason to be in "seventh heaven" once I got to school.  Hubby and I often say how sorry we are for this generation's music because, sorry guys, our music was the best ever!  It's such incredible music that all who have followed us have taken our music as its own too - much to our outrage and chagrin.  WE never claimed OUR parents' music, after all, nor wanted to. However, we HAVE come to realize that we must share.

You'd walk into the student center and the smell of 2% beer (vs. the full-blown 4% beer) allowed to 18-year olds by the state of Virginia would assault your senses as Rod Stewart sang about "Maggie Mae."  As my friends would get that almost-forbidden beer, I would outwardly bemoan the fact that I was only 17 and couldn't drink ANY beer legally, though secretly happy I didn't have to as the smell of it made me quite nauseous.  Wonderful memories, truly!

But the music I loved most was the album that blared the majority of the time out of our dorm room, played over and over again.  It was the singer and album I most connect with in those first heady months of freshman year: the newly-discovered Elton John and "Your Song," in particular.  I'd find myself listening to the words as I worked on a calculus problem and my 17-year old self couldn't help hoping that one day someone might love me that way too.

It was quite miraculously and unexpectedly that I did find that love - to put a "hokey" spin on things. These days, whenever I hear "My Song" I find I have such mixed emotions. I realize that my hubby never knew me when I wasn't sick.  Oh I was able to hold down a great job for a while, at a publishing company I thought would only happen in my dreams.  But it was a puzzle to us both that hubby had to literally push me out the door each morning and on Fridays I would crash on the sofa in my work clothes and not wake up until Sunday afternoons.  I was able to have three wonderful children but each pregnancy and delivery was either a near-death experience or one fraught with complications galore.

To my ever-ending sadness, the kids never knew me as the "real" Irene/mom.

But there is one person left who does remember the "real" and "old" Irene. And what a blessing.  Without her occasional throw-away remarks, I too would have forgotten the "old" me.  I remember when "So You Think You Can Dance" first came on the air and my BFF said, off hand, "I look at the show and think, 'Irene could do that much better!'". Huh???

Or she'll mention my playing of the piano.  Years later, when the kids took piano lessons, I decided to go on and continue piano lessons after a long time away from the piano. What a disaster and what a reality check!  Fibro-brain had such trouble reading the music that I might as well have never learned it in the first place,  but most of all, my fingers, which were always so strong, could barely press down on the keys to make any sound.  Worse, at the time we didn't understand what was happening and I was simply disgusted with myself, my self-esteem lowering even further.

My voice, too, lost it's singing ability.  The muscles are too weak.  My daughter calls my smile for pictures "mom's fake smile," but doesn't realize that the muscles around my mouth are just too weak for a real one any longer.

This disease is wicked and cruel.  It puts you in the worst place in terms of health.  It robs you of your glow, your essence, your life as you knew it.  In some cases, it robs you of almost every happiness you ever knew, enjoyed or felt. Yet, ever so cruelly, it "appears" to make you look healthy - and I say "appears" because it does make us look weird or a bit "off" to the world.  Good grief.  I can spot a CFIDS/ME/fibro person anywhere I go!  To me, the signs are so obvious.  I only wonder, why aren't they obvious to healers?

So, VL, I'm thrilled that you were able to go to see your mom's favorite singer of all time, and know you felt badly for me.  And I loved that when Sir Elton sang "My Song" every fiber in your being wanted to hold up your cell phone so I could hear it live, only not doing so because you knew I wouldn't be able to really hear it.  And Linda, thanks for all the little casual reminders you unknowingly and innocently throw out every once in a while to remind me of who I really am, underneath this wretched illness.

In the end, I know that I'm blessed and I know I have a life I never even dared to dream of as a child.  I know that no one's life is perfect, despite all appearances.  Everyone of us has burdens we carry.  It's just that some of us have bigger ones or some of us have more invisible ones.  But no one gets out of life unscathed.

However, that doesn't stop me from wishing that I'd had a handle on this illness in the early years - or a diagnosis for that matter.  Had we known some of what we know now, perhaps there would have been a chance that I'd be able to go to our local supermarket or mall more often than about once every five years.  And maybe when Sir Elton came to our litte town, I'd have had the energy to see him and hear him sing my very favorite songs live.

As always, I hope all are feeling their best, only better.  Ciao and paka!


  1. I COMPLETELY understand your post. I am so frustrated that I'm not well enough to go to a concert when my favorite bands are playing nearby. Mumford and Sons played near NYC in NJ a few weeks ago. I introduced the band's music to my brother. I'm happy he got to go but, I knew I couldn't. There were no seats - it was standing room only. There's no way on Earth I could’ve physically done that.

    My best friend and I have been friends since we were 8 years old (we're 39 now) so she knows the pre-Fibromyalgia me. But, there are quite a few people who will never know the person I was. I'm happy I decided to go away for college rather than staying in-state because it gave me the opportunity to be more independent and to have experiences I wouldn't have had if I had been at the college that's only 45m away from home. There's no way I could've known then that it would be my only truly independent time but, I'm so grateful for it.

    1. Oh so much of me wishes that you DIDN'T understand my post. The validation is ever so sweet but I just get so upset that people are still so ill with this illness. Fibro is really rough and that's such a gross understatement that no one can appreciate unless they have it.

      It truly IS wonderful that you have a best friend who remembers the "old" you. That is sooo very special. But hang in there. There really are great strides being made in fibro. Things like the lack of Human Growth Hormone, Vitamin B and magnesium deficiencies. Really, so much is being done now.

      Don't give up hope. Yes. You can have rotten days when you want to yell and scream. But just remember that there really is hope and a lot of really sick people are getting so much better.

      I'm so glad you wrote in. I really had been worried about you. Please keep in touch when you are up to it. And I think there's always my email to write to with the Google connect "thingie" if you want to go that route. xx