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.

Sunday, September 30, 2012

Not Now Dear, I REALLY Do Have a Headache!

Pregger's motto to self: I do NOT have a migraine, I do NOT have a migraine....

There are a few subjects which haven't, as of yet, really been acknowledged in this blog, mainly because they are such enormous problems in our CFIDS/ME/fibromyalgia world that it often feels as if I'll open a can of worms too difficult to deal with.  And who wants worms?  They are such slimy cruddy things  - the worms, I hasten to add, though the migraines could very well be described by those two adjectives, as well as many more!  I'm afraid, frankly, to even start in, but I'm taking the plunge since the migraine aspect of this illness is a huge problem.  Furthermore, it boggles the mind to realize what an enormous problem migraines are across the board, across all societies.

Though I think I'd always had bad headaches as a child, I was never able to acknowledge them since I distinctly remember my mom telling me that children don't have headaches, they caused headaches!  So, somewhere along the line I must have learned to ignore them and in doing so, I must have come up with ways or strategies which enabled me to deal with them.  Washing and scrubbing the floors on my hand and knees was one strategy, I realized many, many years later - it was a particuarly effective coping mechanism with the added benefit of seeing a job well done. (Goal-oriented?  Nah!  That's not me!)

And if you think about it, this coping mechanism was in many ways the sort of thinking and way of enduring pain that I later learned in Lamaze classes before my first child was born.  And boy (or girl)!  Did I ever want to be scrubbing the hospital floor when I went into labor with each of my 10-pound screamers!  Somehow the hospital staff was not responsive nor convinced by the strategy I proposed: their loss!

But let me tell you: I've always lived with spotless, gleaming floors and they are a "thing" with me as far back as I can remember.  Well, not in very recent years, but that's only because my body's no longer able to do this "deflection." However, my mind has yet to be convinced, as often happens with so many aspects of this DD!

My "denial" over headaches/migraines didn't last too long once I married and became a baby factory.  One day happy hubby came home from work and we sat down to "chill" out with my juice and his soft drink (party animals that we were) watching "Wheel of Fortune" (getting nerdier by the minute?) when hubby shouted out, "look at that!"

Well, I couldn't exactly look at THAT, since I had almost no vision in my left eye and the right wasn't doing very well either.  When I calmly explained to practically-hysterical hubby what was going on, he wanted to drag me to the ER immediately but I simply didn't want to be put on display.  I was already 6 months preggers with child #2 and there were also practical considerations!  Who would take care of baby # 1, for example? Would the Doc Juniors working the ER's even know what was going on?  This early in my CFIDS/ME/fibro saga (still years before a diagnosis) I was already, instinctively, saving up my "health credits," - "spoons" as today's generation calls it.

I felt that annoying hubby was blowing everything out of proportion.  I had difficult pregnancies and every problem I'd described to my ob/gyn was a classic pregnancy symptom, even if many were a bit unusual.  Why would this blindness be something to get excited about, I wondered?  Of course, I conveniently forgot that terrified-hubby's grandmother went blind completely during her next-to-last pregnancy never regaining her eyesight.  Consequently, she was never able to actually see her 9th and 10th babies. (These women should have gotten medals of some sort, I swear!)

Luckily, earnest and freaked-out hubs was able to locate a neuro-ophthalmologist for the next day - in 1980 they were hard to come by, but it was NYC and to give NYC its due, you can find anything there.

As it turns out, the diagnosis was immediate.  Quite simply, I was experiencing a migraine equivalent, something that happens relatively often, I understand, to pregnant women who experience severe migraines.  

Well, what wasn't so simple was that I told my doc that he was sooo wrong, since I never even experienced headaches, never mind migraines!   A bit of childish "yes, you do!" and "no, I don't!" went by for a bit with my noticing that ever-annoying hubby was not coming to my defense!  Instead, he just watched us go back and forth in a sort of trance, almost as if watching a tennis match.  When I finally called him on it, he said in a shocked but hushed voice, "but you DO, Irene, you tell me you have headaches all the time!"  Huh?  Oh what a betrayer!  How dare he LIE about something so important!  (And I happen to have a huge bugaboo about lying - huge! Was I going to have to go to divorce court?  Were my hormones all over the place?)  At any rate, this was the first I'd heard of such nonsense!  Where the heck did he come up with this one?   Did he want a diagnosis so badly that he agreed with something that was so very wrong?

As it turns out, I was the person in the room who was in deep denial (ironic since I just wrote recently how I do NOT do denial, but please keep in mind that this all happened before I'd become a "professional patient"!).  The denial was so deeply entrenched that my mouth would complain about the darn "headache" and then I'd go into floor-washing mode, never hearing my own words, never realizing why my floors were always gleaming.  Yes, noises bothered me at times (ok, almost ALL the time), light was such a factor that I practically turned our bedroom into a bat cave and so on and on and on....  But hey, didn't everyone?  (No, they DIDN'T, you stupid, stupid young fool!)

After that, I'd always felt that perhaps the reason that my migraines became progressively worse was because someone had dared to yell out that the Emperor had on no clothes.  Once those suckers were identified, there was no turning back.

What I've come to realize, however, is that with the second pregnancy, it was no shouting out about emperors nor clothes that caused the progressively unmanageable migraines.  It was simply that my body was no longer able to play the mind games that were involved in denying my neurological problem.  Worse, I was so afraid of side effects hurting my babies that I never took any meds for these migraines, despite reassurances that a pill every once in a while wouldn't hurt.  Huh?   No, I wasn't about to endanger my babies and there were many times that hubby and I would cry together trying to get me over the worst part of a particularly bad migraine.  

What I also realize, in hind sight, is that the reasons my migraines had reached such epic proportions when just years later I was OFTEN hospitalized for these "little headaches" was because I was getting progressively worse with this monster illness of CFIDS/ME/CFS/fibromyalgia.   My body had had too many physical stresses put on it since that infamous flu that started this whole mess.  And the physical stresses just wouldn't let up.  The latest had been that I'd lost more than half my blood volume in a sudden gush when I delivering my first baby and the problems that were put on my body as a result of the complications of that delivery were further assaults on the body.  They were signs, in fact, trying to warn me that I needed to slow down and that my body just couldn't take any more abuse.  It was most unfortunate that no one realized, in the middle to late '70's and even well into the late '80's, that there was much more going on than "simple migraines," though of course, there's nothing ever simple about migraines, period.

Getting the migraines under control took many, many years and many hospitalizations.  The meds back then, compared to today, were woefully pitiful.  We, for heavens sake, didn't even realize what was happening, everyone (but me) making excuses for anything strange that happened to me, from pityriasis rosea (a childhood illness I had before my first pregnancy) to shingles, an "old folks" illness at the time not seen in a woman still in her 30s.

Eventually, my migraines became totally uncontrollable, but once I hit rock bottom, it was only then that I DID get them under control.  Yes, I still get migraines.  Worse, I get "body migraines" as well.  However, this is all for another post since I've already gone on way too long!

In the meantime, I hope everyone is feeling the very best they can be, only sooo much better!  Ciao and paka.

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