Tuesday, October 29, 2013

Lost on the Isle of MS

MS can be a lonely disease.  With so many invisible symptoms, often it feels like you are on a remote island.  Not a nice one, of course.  Thankfully, no indigenous headhunters exist in this dominion but there are plenty of figurative bear traps to avoid, never knowing if that next step will produce throbbing pain, a stumble or spill.

Visibility can never be taken for granted.  A fog doesn’t roll in; it appears suddenly, impeding my vision for a few minutes, the entire day or much longer.  There is no weather forecast or crystal balls to predict my health for the day and there is little knowledge among the local medicine men as to why my vision comes and goes.
Even my mobility might suddenly be impaired; numbness in my extremities that limit my movement.  Loss of balance is frequent; often I awake in the morning with bumps or bruises, unable to remember how I got them.  Chronic battles with tingling or other curious sensations is common and sometimes other maladies might arise, perhaps one foot dragging behind the other, or the sense that everything around me is spinning.
It’s a rough terrain, leading to constant exhaustion from the moment the sun rises to the final moments before I drift off to sleep.  The landscape is not quite quicksand, but it’s close.
With so many other symptoms of the “invisible” variety, one might even think there is an enchanting quality to this island.  But the man behind the curtain isn’t an illusionist, entertaining the audience by pulling a rabbit out of his hat; instead, it’s more akin to the “Smoke Monster" from Lost.  And like in the show, this mysterious creature’s origin and complete impact is never really understood or explained…but you still know to tread lightly when it appears, as it wreaks havoc for all in its path.
Island folklore suggests the best cure is to ingest or be injected with mystical elixirs, containing side effects that outnumber ingredients. These potions might restore mobility or improve vision, but I never feel quite the same, as the damage from the previous setbacks always linger.
This summer I spent a lot of time "lost" on this island and even mapped out a few new areas that I’ll be sharing soon. 
Stay tuned for next week's episode... 


Similarites exist to the island of "Lost" (J├Ąger keeping me company)
 
 
 

Monday, October 21, 2013

Wake Me Up When September Ends

Happy Autumn season to all...

My sincerest apologies for no updates over the summer.  From a health perspective, it wasn't my finest summer.  I was never quite sure if I had made it through my latest relapse or if there was still more surprises in store for me.

I'm hopeful that things are starting to get back to normal.  The steroids worked, my walking is greatly improved (although it is with the aid of a cane from time to time) and a lot of other new symptoms I was experiencing (mostly sensation) have subsided...or I've just had to get used to them by now.

More on that later...to be honest, I've started many entries over the past few months but I consistently was unable to tell the story that I wanted...mostly, because I didn't know where my current health was going.  Was my foot drop going to become permanent?  Were the vision issues I experiencing temporary impediments or was it going to be the new normal?

Silly as it sounds but I didn't want to jinx what was going to happen next.  I know, its ridiculous that I think I can have that kind of power over my disease but what can I say, MS can do a lot of things but it can't (and won't) kill my spirit.  I'll continue believing that I can "will" any new health issues away -- if nothing else, it's been a true education in just how competitive I am.

It's been a tough few months and bad health or not, I miss writing and it's time.  I might not know the ending but that doesn't matter as much as the road that I will be traveling on.

 




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