Sunday, February 23, 2014

on wholeness and invisibility -- more rambles on life with pain

I spend a lot of time thinking about the impact of chronic pain, how it touches every facet of life.  Heck, that recurrent thought is itself one of the side effects...I see it impacting my life and, although some might counsel doing so, just ignoring those impacts is impossible.  If you dig into the online pain community, you'll find many references to Spoonies.  The Spoon Theory is one woman's attempt to explain chronic illness to a healthy person, with a focus on the pure exhaustion.  It's worth a glance if you've never come upon it.

I also think about how these constant impacts can occur with very few outward signs, particularly with respect to strangers we might see at the grocery store or crossing the street.  I've said this before, but I look like a fit 30-something woman so no one expects me to move like an unhealthy 80 year-old (I know women near 80 who move a LOT better than i do!).  Aside from people not understanding why I'm fighting to get the soda in my cart at the store and why I need the handrail-side of the stairs, there is no way to explain, in the moment, how the pain (and meds) invade my brain and steal my words so I might grasp for the word "penny" when digging for one I know I have in my wallet.  Ironically, I can't very well explain the loss of words when my words are lost...long-term companions will get an explanation eventually, but the cashier I'm standing before and the angry guy behind me just see a fool.  And, to be a bit prideful, this is especially hard b/c I'm generally a smart cookie, especially when it comes to communicating.  It is common for tots to either walk or talk early and then be a bit later with the other.  I talked early and quickly got the hang of combining words....I think I walked even later (and less) because I could just SAY what I needed instead of getting it.  Not being able to "say" is frustrating/crushing/humiliating.  And that' just a single goes on and on...
There are days I want to wear a big flashing neon light that says "Severe pain on-board" in the hopes it will explain some of my actions and, frankly, get me a little extra help (I could write pages about help offers, non-offers, the visibility of the issue at said time, etc.).  Yet, there are other days when I want nothing more than to look "normal".  (likely a grammar error, but I stand by it...grammar is about clarity and the outside period advances clarity).   The newest challenge for the latter days is that I hit the length of disability needed to be Medicare eligible which feels so awkward, even if the only people who I need to reveal it to (ummm, besides the Internet) are at doc offices and pharmacies and many of those people know that Medicare is for more than just the elderly.  Still, this has hit hard; the need to say Medicare and have it mean me is almost outside of my comprehension. 

Anyway, Sunday night ramble done.  Reply if you wish.  I may soon solicit input for a future post and hope I'd be able to get enough.....prob will have to turn to my FB to get enough....

Hope you all have a lovely week.  Thank you for visiting....there's been an atrocious pain spike for a few days and it does help to know some folks out there are watching (and maybe learning) from my rambles.  

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