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Your Best Laid Plans May Not Be What MS Has In Mind For You

What the Georgia Dome Implosion Photobomb Has To Do With MS

 

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Sincerest apologies for my recent radio silence and the lack of notice, but here’s what happened.  Have you seen this video?:

The Weather Channel crew had gotten in position, set up the shot, and camped out 40 minutes in advance to get the perfect view of the Georgia Dome implosion.  And then, right at the very second the spectacle began, that bus rolled up and blocked the entire frame.  And it lingered just long enough to ruin EVERYTHING.  And then it crept along on its way, literally leaving a view of the Dome’s smokey ruins and figuratively leaving the smoldering ruins of The Weather Channel crew’s meticulous plans behind.

I was CRYING from laughing so hard when I saw this footage on TV during the wee hours; partly because it was hilarious (empathetic apologies to the TWC crew because I feel your pain, but you must see the humor in this, right?), partly because it was such a truly perfect metaphor for the way life goes sometimes that you could never articulate in words, and partly because it was totally what had recently happened to me with MS for so many months. I think that the crying was also a cathartic release of my own pain of the past several months combined with a “Well, hell…” recognition of another lighter way to look at everything that happened to me, let it go, and move on.

You see, I had ended 2016 on a roll and had all these big plans mapped out to hit the ground running in 2017.  I was ready to do some great things and hopefully help a ton of people…and then the MS bus rolled up and blocked everything.  But, unlike the Marta bus in that video, it didn’t roll on—It parked and the driver got out, walked away, and left it there.  So much for grand plans.  MS had other plans (as it often does) that didn’t care about mine. 

MS said “Grand plans? HA!  Maybe I’ll give you enough energy to be able to get to the bathroom and back.  Maybe.” I hit the ground, but it was with a thud, not running.  I dragged myself to necessary medical appointments and other must-dos, but I could not muster the energy to manifest even one step of any of my big plans for 2017. 

I was struck with truly disabling fatigue for about 5 months straight.  This was not the “usual” draining fatigue that we experience with MS…I’ve gotten used to having the “usual” MS fatigue and even worse bouts of it for a period of days and sometimes even a week, and I’ve learned how to manage that.  This was different.  This was the decimating stuff that I hadn’t experienced in over a decade.  It went on for many consecutive MONTHS without let-up, and I was NOT prepared for it.  I guess maybe I’d thought I’d gotten lucky and had been spared from it for good, but NOPE.  Even if you haven’t experienced it for many years, an MS symptom can boomerang and get you again.  And that’s exactly what happened…the severe, prolonged version of fatigue came back after all of these years and completely wiped me out. I’d forgotten just how all-consuming it can be, and I really could not function.  Answer the phone?  Too difficult 95% of the time. Texting?  Also too hard, except for forcing myself to return quick good morning texts sent lovingly by a dear friend in Kentucky just to try my best to stay connected to the world.  Deal with the mail? Ugh.  Go online? You’re kidding, right?  That would mean getting up and getting over to the computer, even before facing all the online noise.  Even the thought of opening up Facebook to the overwhelm of a billion Candy Crush notifications was paralyzing.  As much as I wanted to, I just couldn’t muster the energy to do it and even notify you guys that I would be gone for a bit.  I felt like I slipped into some kind of frozen time warp and, before I knew it, I was drowning in it off-the-grid.

To add insult to injury, every time that I started trying to break out of this morass, I ended up being rewarded with additional illnesses and injuries that kept me set back.  I fell and hurt my hip, bending my cane in half (it broke my fall).  I somehow injured my arm (still not quite sure how I did it, but it still hasn’t fully healed).  I caught severe colds that triggered pseudo-exacerbations that caused severe MS symptoms (that they don’t give you steroids for because they’re not “real” exacerbations) that left me needing weeks of recovery each time just to be able to stand again and barely walk.  I mysteriously injured one foot and then managed to injure the other foot when I fell asleep and fell out of my chair (You can’t make this stuff up!).  I could tell that something was just WRONG and things were just off somehow overall.  I decided that it was all telling me that I needed to just stop, be still for a bit, figure things out, be able to recover, and just get well again.

When I finally began to recover, I had to first get over the horror of how much of my life had just slipped by, the reality and shame of things left undone and resulting consequences, and the realization that it was seven months later than it felt like it should be.  I froze for a while trying to figure out how and where to get started again, and in a crisis of confidence, thinking “If I’m feeling like I’m starting from scratch again, then how can I help anyone else?”  And then I realized that’s EXACTLY how I can help others and hopefully you, too.  As I say in my book, this “BS of MS” journey is NOT a one-and-done kind of thing, but an ongoing process that’s possibly even a life-long journey due to the nature of MS.  There are relapses and setbacks, so we’re preparing for and working on not only how to keep managing when things are so-called “stable,” but also on how to manage the occasional knock-out punch and get back up again when we fall.  We may get unstuck and get our lives moving the way we want; but then experience a setback that hurtles us all the way back to what feels like square one, and then have to get unstuck and get started all over again. Hell, we may have to (are likely to have to) do this multiple times. And I’m going through this very process (AGAIN) right now. I figure the reason I just experienced such a major setback might just be so that I could learn some even more powerful lessons and share all of this in real time with you as I go along.

Maybe you may be currently experiencing something similar or recognize something in my experience because you’ve gone through it in the past. I’ll share what I learned and what kinds of things I’m working on and putting in place to help me consistently manage from a more empowered place both during and after any future setbacks. I hope that sharing my experience and solutions will help, whether you’re just beginning your journey with MS or have been around the block with it several times already. I’ll continue this blog with the regular stuff, but I’ll make sure to do a once-a-week update on my own journey along with helpful solutions, tips, and lessons that I’m learning along the way.  You’ll be able to find those posts because they’ll be in a series titled “How To Start Bouncing Back After A Prolonged Setback.”

Do you recognize any experiences that you’ve had that are similar to my story above?  Are you currently trying to manage or recover from any recent setbacks?

 

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