Multiple Sclerosis-- especially Relapsing-Remitting MS-- will drive you crazy. I’ve been asked to fly cross country to give a seminar on a website promotion package that I’ve put together for a national trade organization. The conference where I’m going to speak is in Las Vegas, NV. So I said “Sure, I’ll do it.” and informed Mandy that we’re going to Las Vegas for a few days. I thought she might enjoy a little trip. Well, I said this a few months ago when Mandy was feeling pretty good. But like each of us knows, MS has a sense of humor-- it lurks in the shadows, waiting for something that you really want to do before deciding to waggle it’s finger at you and say, “Not so fast-- that looks like too much fun.”
Needless to say, Mandy’s been heading downhill for the past few weeks and, I suspect, will hit rock bottom just about the day before we’re ready to leave on our trip. Now there’s always the option of leaving her home, provided of course that we both feel she’ll be OK by herself. But neither of us want to do that. So now, in addition to putting the final touches on my presentation and making sure that other business items are taken care of, I’m looking at that lightweight Hugo wheelchair we bought a few years ago and considering taking it with us on the trip. Which reminds me that I’ve got to give the airline a call and see how they handle wheelchairs when you bring your own.
Now I realize that there will be many of you that say “Boo hoo-- no pity for you, Jake Crest. After all you’re going to Las Vegas.” Fair enough, but my point is that, as caregivers, we’ve got to do double duty. We’re participants in a war-- a war between the Beast and those in our care. We’ve got to keep ourselves out of harms way, staying back behind the line of fire in order to care for those in our charge. At the same time we must figure out how to stay ahead of everyone else so that we can see trouble coming and take whatever precautions or preparations are necessary. It’s a skill that you learn only from experience. If we were in the Army, they’d have to make up a new position for us. We’d be called Scaredy Scouts.
So, my fellow Scaredy Scouts, I wish there was some great moral to this story that I could impart. Some little bits of wisdom... but there’s not-- yet. With the next post I’ll let you know how it all turns out. Till then...
Published On: September 02, 2008