#gettingtoknowIBB: this is the hashtag on several of my Instagram posts these days - aka - a way to get to know IBB outside of just our diapering moments.
#fibromyalgiastinks: this is the other hashtag you will see from time to time - aka - my body is fighting itself.
|#fibromyalgiastinks #gettingtoknowIBB #sbish #brookeside|
The quick version - October 2006 - I went from a perfectly healthy graduate student just starting my studies at the University of Kansas to a 26yo woman paralyzed in a hospital bed. Paralyzed. Just not the kind of thing you ever expect to experience in your life. (More on that here). But the paralysis was temporary, and I've since relearned to walk, talk and appear to be a normal person. Supposedly I'll still make a full recovery, the doctors say, but after almost seven years, it comes a point when you want to scream (upon initial diagnosis they said two years for a full recovery, though more recent research suggests five to ten years; come find me in 2016, I guess?).
Every single day I wake up trying to gauge what my day will be like. Good pain day? Bad pain day? How's the fatigue? If my daughter begs 'pick me up!,' can I? For every step forward, there are ten back: for every advance in my recovery, just when it seems like I'm on a roll, my body says 'haha, not so fast, sucker, take this.' And I'm left trying to figure things out all over again.
The last couple of years seemed to be on a pretty good upswing, slow and steady, slow and steady, getting better. Better to the point I felt like I could start committing to things outside of our home's four walls - I opened our storefront! I even bought a cloth diaper company - Peachy Green (yes, another blog post begging to be written!). And then my body said 'haha, hold it, lady.' And threw me the worst curveball I've had in a while. A long while.
For the last month I've returned to a point where my focus is basic care: shower (sitting on the floor because I cannot stand that long), manage the online business from bed (while my amazing team runs the physical side of things), trying to parent from the couch. I just sit here shaking my head at it. Seriously. I have to do this again? This cannot be happening, there is too much to not be able to work the usual 14-hour day.
But here's where it gets really introspective.
I'm still here. It could have been so much worse. As far as neurological issues get, GBS is kind of one the better options. I don't know how close to death I actually was, and I don't know that I really want to know, but it felt awfully close. I'm here to hold my daughter, to be with my husband, keep ticking off my goals from the very long list of what I want out of life. So the last month has kicked me in the rear. I just took twenty steps back, but I'm getting up. And I'm not going to let this hold me back.