Ready ... Set ... Go-Bag

Before my RSD spread to full-body, I was a highly spontaneous person.  I could pick up and go whenever I wanted.  I was still able to work so I still had money and I could go just about anywhere for a quick weekend getaway.  Road trips were not yet taboo and I had fairly reliable vehicles at my disposal.  I could throw clothes in a bag and go … and not really worry whether or not I had the appropriate amount of layers.  And then the beast spread … and spread some more.  I miss those better days.  

Before I knew it I was confined to my bed.  On the rare occasions when I could travel, I would have to fly to my destination heavily medicated and padded against turbulence, other people, the pressure changes in the cabin, and the beverage cart.  I finally quit traveling altogether … unless it was in direct relation to my sister and brother.

But remember, it’s not about what we can’t do anymore.  It’s all about what we are able to do now.  I, for instance, wanted to take back some of my spontaneity and independence, but as an RSDer, that is next to impossible.

So I did a little compromising with myself.  My independent side had to give in, and it finally agreed that traveling ‘alone’ was just dumb.  I could either travel with someone who was familiar with me and my RSD or there needed to be someone at my destination who was prepared to handle me at my worst when I arrived.  (Not to say that I’m always a wreck upon arrival, but some form of TLC is usually necessary.)

For my spontaneous side, I created a new trick that allows me to not stress and just go!!!  On the floor of my coat closet is my “go bag.”  It is a black, white and yellow Vera Bradley tote bag that contains a sling, an ankle brace, an Active Ankle, a wrist brace, a wrist pillow, 2 Ace bandages, a microwavable neck wrap, a pill box (contents to be named in a minute), 1 pair of leggings, fleece sweatpants, 1 tank top, 1 pair of soft and fuzzy socks, 1 long-sleeved modal/silk top, a blanket, and a sweatshirt.  In my pill box are: 10 nerve pills (holistic oils), 6 Neurontin, 4 Indomethacin, 2 Excedrin, 6 Advil, 6 Tylenol, 2 Midol, 2 Immodium, 2 Zantac, a small container of holistic oil analgesic, Ketamine nasal spray (unopened - cuz I hate the shit.  It’s emergency-only stuff), a rose crystal,  2 packets of Via; and a sleeve of Nicorette gum.  Everything I could possibly need in order to stay present in my life.

I put it in the car with for: road trips; hollerday day trips to a relative’s house;  parties; out-of-town mall excursions with my sister, mom and the munchkins; slumber parties; mountain drives; meetings; sporting events; … any events actually.  When I don’t have to use it, it goes right back in the closet as soon as I get home.  If I do have to use it, I replace what was used and put it back.  It helps having numerous pairs of leggings, tanks, socks, sweats, etc.  Just swap ‘em out and do laundry.  (ooh … that reminds me … I need to get more Via) … But I cannot begin to tell you what a comfort it is to have these things … especially when you least think you’ll need them

Ok RSDers, how much time and energy do you spend packing up your “necessities” before you leave the house??  How many times have you been out with family and/or friends and had to back out of an adventure or leave early because you weren’t prepared??  How many times have been away from home, for whatever reason, and were hit with a flare that you could do nothing about??   Stop!!!  It’s silly!!!  We need to live!!!  Allow yourself concessions, make it as easy on yourself as possible and before you know it, you’re grabbing your own go-bag and scootin' out the door!!

This is me, keeping the faith!!