Monday, November 27, 2006

It's Time To Tell The Truth...Mine...

     I am having to lie flat and pen this post on paper to eventually transcribe it to "Cheese"...I hope I can read my handwriting later when I try to type it! LOL

     I awoke this morning feeling far ill and ill at ease than I have felt in quite some time.  Yes, it is true...I have mega doses of corticosteroids pulsing through my body at levels that should kill a small herd of elephants..this causative factor alone contributes heavily to my over all sense of "dis" ease.  There does remain a small, snippet of logic in this MS brain of mine, however!  But even knowledge and understanding does not alter the "feeling" of mental discomfort my mind has taken residence in.

     Most often on this blog, it has been my goal to educate and to entertain...and just once in a while, if the stars align properly, to tackle those "unseemly", those "uncomfortable", those "hidden" things about Multiple Sclerosis we ALL know exist, but choose to sometimes ignore. 

     Today, I feel I can no longer ignore the very serious side of MS--fear and loathing.  And what better way to open up this topic than by sharing some of my own, deeply harbored (and some may say secretive) thoughts.

     Thus, my "truth" as it is known to me.  Certainly not my ENTIRE truth, but a piece of my truth that, like dirty underwear, is often kept tucked away out of sight for fear what other's might think of me...embarrassment and perhaps guilt of being seen as vulnerable or weak.

     This has been an incredibly difficult and emotional MS year for me...that, most of you could have read between the lines of "Cheese".  You are all quite bright and intuitive and, unfortunately share the same disease as I...we with MS DO recognize each it or not.

     I have touched on occasion (perhaps more often than you cared to read actually!) of the fact my MS has become "aggressive" this year...there's nothing particularly profound in this statement or realization...weALL progress in our disease at one point or another.

     What HAS come as a shock to me however, is the overwhelming dissonance I feel with this reality...a reality that strikes at the core of my existence and very being.  A reality offering glimpses of mortality, destruction, and probable disillusionment...I am not, nor will I ever be again, the physical and emotional being I once was.  And I am saddened, angered, and frightened by this.

     It IS true...simple aging and maturity also create this same scenario on one level or another.  But with MS, there is an extra "push" not already pre-programmed in the body and mind.  With MS, denial is much more difficult to maintain because of MS's relentless unpredictability...this unpredictability is what I call "The True Face Of MS" (sorry National MS Society slogan people...your ads are nice, but not too real!).

     I, like you, struggle to maintain some semblance of balance in my life while living with MS.  That "balance" is often precarious footing and the uncertainty of the disease frequently throws me into fear.

     I have many fears...some quite obvious...some quite unconscious.  Of course, the "BIG THREE", as I like to call them are:  1.  Disability,  2.  Self-support, and 3.  Loss.  As you can imagine, there are no clear-cut boundaries between these fears and they often selfishly overlap upon one another.

     Today, in particular, all THREE are smacking me around in what feels unfair battle.  I awakened with an increase in symptoms, which was both surprising and unpredictable, given I really felt I was "on the mend" after a restful weekend.  My hands are tremoring somewhat coarsely, which is new.  My vertigo/nausea persists as though it has found a new lifetime home, and my left leg is feeling useless.  But the worst (if one must pick) disability factor of my day today is my speech.  It is slurred and difficult for ME to even understand...very new and most alarming.  I cannot work with slurred speech.

     As you might imagine, my fear has stopped me dead in my limping gait tracks today.  Disability, self-support, and loss are staring back at me in my foggy mirror and I do NOT like their reflection.  I am afraid.  I do not want to look at these three visitors...I want them to leave me be so that I may rest and recuperate.  Yet, they remain, bringing with them only uncertainty and anxiety that even the strongest mind-altering medication cannot erase.

     It is here in this place, which I believe may be to the right and two doors down from hell, that I find myself today...immobilized.  I find myself "stuck"...unable to move, to breathe, to "do", to grieve, to become angry, to cry, to do anything other than put pen to paper in an effort to describe this "place" I have been cast into.

     It is not my intent to depress anyone today.  After all, I have no influence over your choices of emotions or what you read...and I'm quite certain if you tried hard enough, you could find your own means of "depression".  LOL  It is simply my goal to find that similar and common ground we feel with this call a "spade a spade", so to speak.  To relate to you across the miles as much meaning as connect even in discomfort.

     I offer no quick "fixes", no cures, no drug remedies, and certainly no advice how to AVOID this place of feeling.  Instead, I offer a rare and inner glimpse into my own true thoughts and feelings...the ones I generally censor from "Cheese"...the ones we ALL know exist, but cannot remain in for long periods of time to spare ourselves consumption.

     The feeling of fear...  


billibotton said...

Dear Fear:
You need to leave baitulos alone, for now. I have it on good authority that she can kick your butt any time she wants to, so you better watch it. Payback IS a mother, and you will be the youngun' in this whoopin' scenario, if you get my meaning. Bait, as a 'watcher', I can relate. To "call a Spade a Spade"...dayum. I'm speechless, but not stopped! Prayin' for you, along with many others,   everyday, can't you tell. And if your off TY, I think that just sux. BUT we know (hope) you'll do well in your "other" therapies. Others are out there - FTY720 is in PhIII I think, and it's promising with the relapse rate improvement. 2009 approval I think. Let me know if you need a link. Hang in there, ~bb

baitulos said...


Thanks for the have a nice way with words!  Yep, I am a bit "sore" over the Tysabri issue...thought it would be the end all/cure all...guess there's just another ship sailing out there on my horizon, but hope it comes to port soon.  Like the maritime analogies? LOL


mdmhvonpa said...

Sorry you are getting the triple threat MS treatment this week.  If it make you feel any better, I could try to blog about my own dirty underwear.  If I wore any.  ;)  

HAH!  I know you, you are a visual thinker.  You are either picturing my dirty underwear or some Chippendale type fellow strutting about!  Not that I look like those fellows at all.  More along the lines of a rather frumpy version of R Lee Ermey.  I need horned rim glasses to complete the look.

pjorpeej said...

Knowing what a private person you are I thank you for this gift of self.  I'm sure it wasn't easy and I *know* it wasn't pleasant but you gave it anyway.

I'm sitting here with tears in my eyes because I've been near that door to hell too many times to count.  And yes, it's scary and makes you angry because, above all, we don't *want* anyone else to end up there!  Most of all the people we care about.  

These words seem trite and silly but they are heartfelt.  I hope this relapse is a short one and that you're back on your feet real soon.

Gentle Hugs.

baitulos said...


Would you PLEASE blog about your dirty underwear?  Actually, that was quite funny as my original typing said "udderwear"...Steroids make me laugh at even myself sometimes.

I'd prefer however, to just continue to imagine you in your TSD whitey-tighty and leave best alone if you don't mind! LOL

Thanks for the well wishes...this is a beauch.


baitulos said...


Your words are ALWAYS heartfelt and sacred to me...