I’m Starting Over, Again

This week I am back.

Back from an enjoyable weekend with friends. Back after a weeklong business trip during which I spent time with family. Back after a long rehabilitation following some Christmastime falls.

I’m back, but I’m not back to where I was before.

MS Means Repeatedly Starting Over

Many of us will know the experience of starting over as we try to recoup our losses after an MS exacerbation (also known as a relapse). We stop sliding backward after a few days or a few weeks, and we realize how far from our former baseline our abilities have receded.

We dust ourselves off and begin to try to make our way back up to our former abilities.

Sometimes we get there quickly, sometimes slowly, and sometimes we don’t make it all the way back to the starting line. Where we end up — the point to which we recover from an attack — is our new starting line. It’s from there that we move from recovery to rehabilitation. Sometimes we move forward from there, sometimes not, but we all know it won’t be the last time we hit the reset button and reset isn’t the same.

Rather than the steps on an MS progression graph, as shown by the National MS Society, however, it sometimes feels like the staggered start line on a round track, except that it’s a straight-line race, and we keep moving further back in our starting blocks.

Speaking of those progression graphs. Why is it that they always show them going up? I mean, I’m not daft. I know that they are showing increased disability level with plateaus of remission, but it would surely make more sense to show them as steps going downward in ability rather than upward in disability.

I’m Slow, but I’m Moving Again

But that brings me to my next observation. Maybe it’s not a restarting line. Maybe it’s better to think of them as plateaus. A place where we can catch our breath, enjoy the view, lick our wounds, and get on with our climb through our MS lives. Just a thought.

I’m just back from my new restart after a solid three months.

I’m sore, I’m slow, I’m shattered after it all, but I’m back.

The loop I walk used to take me an hour. Today it took 90 minutes. That’s a 50 percent increase, yet I thought I was going at the same pace as before.

Clearly, I was not.

Moving Forward Is the Only Option

But rather than focus on how much longer it took me today than in December, I’m going to remember that it took me two hours to walk that loop when I first started the circuit in November of 2020. I’ll also focus on the weight I dropped once I started walking rather than the stone I’ve added since I was forced to stop.

I got better, then I got worse. Now I have a new place to get better from. And even if I don’t increase my speed, I’m back to all the other aspects of my walks that I enjoy.

We get used to starting over with multiple sclerosis. We start over, and then we start over again. Most times it’s from farther back in the field when we restart, and we mayn’t ever get back to the place whence we slid.

But that’s just part of what living with this disease is about. Because until they find a way to repair the damage already done by MS, starting over again is the only way to keep moving.

Wishing you and your family the best of health.