I live with two women. There’s my wife, Mandy, the woman that I first came to know – strong, confident, and independent. Then there’s the other Mandy, the one that makes an appearance now and then, uninvited, and proceeds to toss strong, confident Mandy out the door without so much as a ‘nice t’see ya.’
Chronic diseases do that to people. While none of us act exactly the same day in and day out, those who suffer from debilitating illnesses such as relapsing-remitting MS know Hell on more personal terms. As caregivers, this is when we must swing into action. Oh, I don’t mean donning a cape and doing all the chores. I mean that when those in your care feel their spirits sag... when the monster has their hope in its grips and is doing its best to shred it to bits... it’s we who must grab hold and help restore that hope to its rightful place.
How do we do that? Each situation is different, but in our case I simply try to go along with whatever situation presents itself. If Mandy’s tired, then we stay home and find something to do. If she’s feeling pretty good, then it’s up and out we go. It might be nothing more than a drive, or a walk through some local store, but it helps Mandy to gauge her status. That’s important, because understanding your body is something with which the disabled constantly struggle.
I sometimes imagine that living with MS must be like sailing a ship through fog. You’re never really sure which way you’re headed. The instruments tell you one thing, just as your gut sends you signals as to whether you’re still relapsing, or coasting, or best of all, climbing out of the hole. But just like that boat, you’re always just a split second away from disaster.
Later this week we’re heading out of town to attend the college graduation of one of our children. We’re flying, and as anyone with MS knows, that can be a real chore. When making plans to attend various functions during our trips, we’re always cautious to advise others that our participation is contingent on Mandy’s health. Funny... it’s not really the weakness that will stop you from doing things. After all, you can always take or rent a wheelchair if necessary. It’s the fatigue that seems to be the real enemy. That bone weary fatigue that makes it impossible to hold your head up or keep your eyes open.
From my observances, I tend to think that fatigue must be one of the worst parts of living with MS. When Mandy gets that way, we half-jokingly say goodbye, assuring each other that we will each be here for the other when she returns.
It’s getting late. Soon I’ll be going to sleep for the evening. I wonder just which Mandy will be lying beside me when I awake.
Published On: May 05, 2008