Tuesday, February 12, 2013

Ok to Miserable…Treading Water to Sinking…Coping to hopeless - in 6 seconds flat!


February 12, 2013
Cushings Disease is like no other.  As if not bad enough that our lives as we knew them – our lives as we dreamt them – are yanked from us, we also have a rash of physical symptoms, aches and pains that are heaped onto our fragile bodies and even more fragile psyches.  The tragedy of it all is that it is a very slippery slope from maintaining to falling off the deep end. 

It is hard to explain to anyone who isn’t living it.  Who am I kidding? It is next to impossible to come to terms with it in my own mind.  How does one reconcile what you desire, what you dream about, who you know you are in your heart and soul with what you can no longer do, the dreams that you have had to relinquish, the person you know you are, but simply can’t physically or emotionally maintain?  Why, on top of all the pain and physical problems, is my ability to cope compromised - allowing me to slip into the dark recesses of my mind; the corners of which are haunted by negativity, self-doubt  and self-loathing. 

Maybe I’m delusional, but I like to think that I do a decent job focusing on the positive.  Maybe I’ve just fooled myself, but I like to think that I have found a way to accept my limitations without forgoing the way of life that I previously pursued.  Maybe it just makes the bitter realities of my life seem less difficult, but I like to think that I’ve done a decent job of re-calibrating my dreams and desires to match the reality of my life as it is with Cushings.   But somehow, despite my efforts, there are times that I am defenseless against the pull toward “the dark side.” 

The thing that frightens me most is how volatile my grip, despite my efforts, proves to be when tested.  Most days are fine.  Most days I am able to maintain an inner calm.  Most days I can cope with the pain.  Most days are do-able.  Most days I can maintain…Most days.   But then, out of nowhere, I can’t.  I can’t calm my inner panic.  I can’t cope with the pain.  I can’t see how to do what I need to do.  I can’t control anything.  I don’t recognize myself.  I feel out of place – like a terrorized visitor – in my own body. 

A little change in pain level, a little variation of the accepted ‘norm’ and I’ve lost my footing.  From there, it’s an odd downward spiral.  Suddenly, I can’t imagine what calm even feels like.  Suddenly, pain seems more intense.  Suddenly, I can’t see a way to begin again.  And then, to top it off, I suddenly see my pitiful self in the eyes of my husband.  I see the weak, unstable, whiny, physically changed, unsure, crabby, impossible to deal with, unable to please, sad and difficult person that I am, and I slide, neck deep and flailing, into the slick and slimy pool of guilt that pulls me further into the dredges of my own despair. 

What a sadistic little trick it is that the very thing that we need to cope with the stresses of life – cortisol – is the thing that is causing all the problems.  It’s like saying, “You need to drink this water to stay alive, but, oh! By the way…the water is poisoned and the poison will kill you.” 

How does one cope with that?  How do you pull yourself out of the mire?  How do you stop the fall into the oblivion?  Where do you find the strength to center yourself again?  How do you stop the out of control spinning? 

Funny thing is, at this point in the downward spiral, the gumption that I need to get back on track is nonexistent and therefore I wallow….miserable!

  

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