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 example....it 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.  

on dwelling, social anxiety, and looking in

There are moments in life that I dwell on and replay in my mind.  In some cases, it is truly about the moment itself.  In these cases, I am often left wondering how a different response on my part might have led to a different result whether that's a momentary difference or a life-altering one.  In other cases, it isn't really about the moment itself but about what it represents in my mind.  These are moments that stand for a bigger pattern or bigger issue and for one reason or another my mind has chosen that moment to represent the larger whole.

One such moment occurred when word traveled back to one of the hosts that I was upset over not being invited to a gathering.  The gathering has several hosts and I considered a couple of them friends.  The others weren't friends, but I kinda assumed there was a shared neutrality...not friends, not people I'd avoid.  A member of the former group stopped me and said he heard I'd been hurt.  He blamed the lack of an invitation on the belief that inviting me meant inviting another person and said the "neutral" folks didn't want to invite her.  He extended an invite and apologized on behalf of the two I considered friends for the hurt.

I didn't believe it for a moment and didn't go.  Life proved me right and it was me, not the other gal, who wasn't wanted (she didn't say it, but I am certain she received the same talk but with a change in parties and it became clear in time she was very much wanted).  I can't say how the conversation had truly gone down and whether I was wrong about the "friends" or it was just the "neutrals" who didn't want me to attend.  

I have often said that people don't have to like me.  That's true.  But the moment above is partly a dwelling point because I am often on the outside looking in and I can't say I don't get caught up wondering what it is that leaves me there.  The moment also left me with the familiar question of whether or not the people I deemed friends also preferred I leave them alone.  That one bothers me a lot.  It leaves me in the rather pathetic position of needing reassurance that I'm wanted....which I know doesn't help my popularity.  I've pulled away from relationships because of that fear.  

I know I have some social tics.  I didn't learn certain social traits early and then (and I hope this sentence makes sense outside my head) not knowing them kept me from learning them later.  I was a dedicated student and I did well but it took a LOT of work and that took time.  I never felt I fit in because I felt like I wasn't up to the caliber of my classmates, yet I know I gave off an aura of thinking highly of my academic self.  I somehow missed being in the social group of my honors classmates and I really never met anyone else.  This all adds up to missing some vital social growth.  

Sometimes it feels like I'm on the outside before I even have a chance to be socially awkward.  When I do get a moment, I do see some repeat "issues" and yet haven't learned the fix.  I am apt to respond to a story with a story of my own and I'm not sure that's always wise but I'm also not sure what else to do.  I have trouble extending social invitations because I worry about pressuring someone into my company and I am aware that not asking makes me less likely to be asked.  While I fear it sounds like a major cop-out, the continuous health problems don't help matters...until I am quite comfortable with someone, socializing takes energy I don't always have.  I talk about health too much...I learned to hide the physical pain for work purposes, but I couldn't keep it up after hours.  

The moment I opened with popped in my mind today and I felt a need to "blog it out."  I'm not sure I did so successfully, I don't know that there's much clarity in these ramblings.  While writing about an emotionally charged subject, like reliving certain moments, isn't fun, I believe doing so helps me process.  Maybe one day it'll lead to some more clarity, either in a light-bulb moment or in a gradual parting of the clouds.  I'm not looking to get reassurance or pity or anything of the sort.  However, as with blogging honestly about pain and certain demons, I'll hit "Publish" in part because I hope one person will stumble upon these words and feel at least the smallest bit of reassurance that they aren't alone in the world and that they aren't the only one wondering how they always end up looking in.  

I won't re-read this, which is totally selfish because sometimes immediate editing also means a bit of sad dwelling, so I apologize if it is hard to follow or if typos abound.  And if anyone happens to recognize the opening moment, please know that while I dwell on it, I don't hold any anger about it...it is a tangible moment that taps into many intangible ones and dwelling on the moment isn't really about dwelling on the moment at all.  

Guide to Living With the Rambler

I've had millions of thoughts over the past months about blogging topics.  Yet, as may be expected, when I sit down to keep my commitment of writing more often, I go blank. 

My world continues to be dominated by the back issues, although wedding planning is rivaling medical matters as a source of stress lately!  I never really imagined throwing a full-on wedding again, and in many ways it is a much simpler affair than my "practice round," but there's still so much to do as the late-April date approaches.  Including figuring out why my computer refuses to be cooperative when it comes to my invitation envelopes (it won't put addresses even close to the middle of the envelope and feels "Mr. and Mrs. Tom Smith" is a two-line affair).

Like many couples these days, Military Man and I have already been living together.  There are certainly reasons why the "old-style" approach is nicer, but it does mean that he already knows many of my "quirks."  I actually provided him with warning regarding a number of them prior to move-in day, I didn't want any avoidable surprises.  Since I'm in bullet-point withdrawal, some important items about living with the Rambler:

• I come with books.  A lot of books.  Poor MM....he just watched as they kept arriving...and had to carry them down a flight of stairs (note: one paperback is light, hundreds get heavy). 
• It is my most noticeable feature, but all that hair doesn't stay put.  Seriously, I'm worse than a dog.  I'm not sure I shed more, but the dark, thick, long strands are certainly more noticeable...and quite the challenge for vacuums.
• The hair also means a LOT of conditioner.  I am not a make-up gal...I only wear a BB cream...but I have a number of hair "potions."  Pictures from before I found my go-to products provide proof of their worth.
• Really, the last hair-related item...I blow-dry my hair.  I can't do it in the bathroom because it frizzes like crazy.  I'm perfectly happy with my current set-up in the guestroom/treadmill-room and I've gotten much better at getting it done pretty quickly, but the sound of a hair dryer would definitely be on the soundtrack of my life.
• I am pretty sure I eat more cereal than a typical household of 4...maybe 6. 
• I still have my food issues.  I will likely need some of my own pantry-space and may need certain of your items kept in places I don't see often.  Like PB.  I've also been known to find the PB and leave a note promising to replace it after it "disappears" in a two-day period.
• Don't plan on late night conversations, at least that you want me to remember.  My current medication regime means I often forget the last 30 minutes or so each night.
• I need my workouts.  Even when it isn't the best idea for me and even if it means doing them at odd hours.  Lately, I lift at 10PM because that's when my body seems willing.  In my Boston days, I was on the treadmill before 5AM.  I got my own treadmill when I moved to State College and it is probably one of my most-loved and most-used possessions.  I was seriously grumpy this summer when it kept breaking down (and thrilled when they finally replaced it...I was just under the warranty wire)
• I call my car Betty.  If I live with you, I will probably name your car too.  I may name other household items as well (the aloe plant is named Sally). 
• I like saving wine corks.  I finally got a trivet to make out of some of them.  I still have dozens despite separating the ones I need for that project (delayed till post-wedding and till I figure out the best knife for trimming them).  And yet still keep more. 

Oh, and one more (though we all know I'll come back and add some to the above since I always think of things once I hit "Post"):

• I ramble.