Living with M.S.

"Living with M.S. is sort of like training for a long race. The harder you try, and the longer you keep at it, the stronger you become.
Eventually, looking back, you may be amazed at the power you possessed, even when you had no idea it was within your reach." (Linda Ann Nickerson)


Managing chronic illness can mean redefining goals

People living with chronic illnesses (such as arthritis, asthma, crohn’s, diabetes, epilepsy, fibromyalgia, multiple sclerosis, and more) are often the most determined folks one might ever want to meet. We fight daily battles, as our own bodies betray us in curious and uncomfortable and frustrating ways.

Many of us have streaks of stubbornness. Let me rephrase that. We tend to have firm resolves, when we set our minds to do something. And this is rather remarkable, considering the countless ways chronic illness can sideline us (often without warning).

We keep on setting goals for ourselves. We make New Year’s resolutions. We sign up for advanced degree programs, volunteer opportunities, extra projects at work, gym groups, craft classes, and special-interest pursuits. Once in a while (or maybe more than that), we have to go for Plan B.

Here’s an example.

A year ago, I registered to run a full marathon (nine months ahead of the event). This occasion actually occurred just over 10 years after I was diagnosed with multiple sclerosis. But I signed up anyway, knowing full well I could find myself in full MS flare-up when race day arrived. (Only I wasn’t. Iwas able to complete the marathon. But it doesn’t always work that way.)

Sometimes our big goals work out. But often, we have to reconsider them and rework them.

Not long ago, I offered to cater a book group gathering. It was sort of my turn anyway. So I agreed to ante up. That day, MS came at me like a beast. I had to phone a friend and ask her to pick up my refreshments from me and take them to the event. She filled right in, and it worked out. But I was sorry I couldn’t follow through that day.

It happens.

I’m all about showing up, if I’ve committed to doing something. But MS occasionally has other plans. I’ve had to pull out of programs and postpone personal projects. I’ve disappointment friends and family members, when I’ve called to cancel get-togethers at the last minute. Those who comprehend life with MS seem to understand. Others don’t.

When chronic illness deals me a mighty migraine, blinds me again in one eye, sets me spinning with vertigo, or lands me flat on my back, my goals have to change. The goal-of-the-moment might become simply making it through that day. It’s pounding through pain to finish that day’s bare essentials.

Living with chronic illness means doing the best we can with whatever life throws at us on a given day.

Bucket lists and to-do lists, be darned. We’ll try to get back to you. In the meantime, we’re doing all we can to hold it together until we get to punch out for the day (whatever that means this time).

Dragons, beware. We hope to come out swinging our swords soon. But for now, we might just hover in the cave for a while. We’re not afraid. We’re just mustering our strength again.

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