Drake - God's Plan
I Want to Plan and Do, but MS Keeps Getting in the Way
Sometimes it feels as though MS is just waiting in the wings for its cue to ruin my plans.
By Trevis Gleason
In This Series
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“If you want to make God laugh,” goes the old saying, “tell him your plans.” With multiple sclerosis (MS) it more feels like if you want to make the disease angry, make a plan to do something.
I used to be able to plan for events or activities by budgeting in recovery time. I’d keep as much in my energy checkbook in advance of whatever plans I’d made, proceed with caution on the day itself, and plan for a few days of recovery afterward.
Now, however, I can’t make ends meet with my energy balance on a “regular” day, let alone a grand day out. And recovery in a day or two …fuhgeddaboudit!
I Want to Feel Like a Productive Member of Society
The crux of this problem is (and I know I’m not alone in this) that I need to keep active to feel like a productive member of society. And to do that, I feel the need to plan and do things that my community and I feel are important. When I make plans but my body cannot cover my commitments, I feel I’ve let myself down. More important, I sometimes do actually let down the side counting on me.
So do I commit to less, thus becoming less relevant? Ouch!
Do I take more symptom management medication to get me to and through whatever commitments I’ve made? Do I plan for deeper, longer periods of recovery (even though such recovery is really just a story I tell myself) to the detriment of other important parts of my life?
How does one find a balance of doing the things that we feel make us relevant in life but that will also make the simple act of getting on with it day-over-day more difficult?
It’s a conundrum.
It’s the rehashing of the old "can’t vs. cannot" argument in my head, time after time.
Grief, Rage, and Coming to Terms With the Effects of MS
I suppose what it really comes down to is another layer of understanding what MS is doing to my life. Not just to my body and my central nervous system, but to my life. Just like all the other stages of grieving a loss with MS, I am going to have to understand it, rage and rail against it, negotiate my way through it, and then — to the chagrin of the “Attitude is Everything” crowd — accept that this is Trevis’ new life.
I simply have to take on fewer, and less important roles in my life. I need to learn to do less but do it well. No one benefits from me trying to be a stronger link in a chain than I am able. I must find the chains of which less will be asked.
It’s a tough place to find oneself, no matter how many times we’ve come to terms with other aspects of what MS does to us. It’s something I’ll do now, and I’ll likely do again.
I just hope I never get used to it.
Wishing you and your family the best of health.
My book, Chef Interrupted, is available on Amazon. Follow me on the Life With MS Facebook page and on Twitter, and read more on Life With Multiple Sclerosis.
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