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It’s never too late to give yourself a break

By Dan Digmann
A common saying is that, “Close only counts in horseshoes and hand grenades.” Here’s my story of how horseshoes got me closer to accepting my MS fatigue.

Imagine how you would respond if a friend commented, “Well you know, (Insert your first name here), fatigue is a common symptom of multiple sclerosis.”

Depending on who the friend is, I likely would pull out one of these three boilerplate replies:
 
  • “Really? Thanks, Captain Obvious!”
  • “Oh, don’t I know about that reality? Like this time when I (fill in your best MS fatigue experience here) …”
  • “This is such a great point, and I totally appreciate you bringing it to my attention. It shows me you care.”  

It’s kind of an elementary fact, right? I mean, fatigue is something most of us living with MS have experienced firsthand and essentially read about the first time we researched the disease after hearing it’s something we have. 

Still, for as much as we want to be a know-it-all when someone else calls out this most basic of MS facts, why are those of us living with MS the ones who most often choose to ignore it?

I understand I don’t have the seemingly unlimited supply of stamina I had before MS. I realize I experience high levels of fatigue I cannot begin to explain to a person who doesn’t have MS. I know heat wipes out my energy to the point I can’t easily or stand up or walk in a straight line. 

It was next to impossible to convince myself of this reality each time I was faced with stopping a task because of MS fatigue. I used to think my inability to stop was just because I was a hard worker with the drive and determination to complete the task at hand. 

After more than 20 years living with MS, I finally am realizing I was just being stubborn. Even more than that, I realized I was – and still am – very much afraid.

Those of us living with MS are perched precariously on an incredibly thin line between giving into the disease and taking a well-deserved break for ourselves. Each time I’m faced with taking a step back to rest because I feel fatigued, I get the sense that I’m letting myself down and I’m letting MS win. 

Whether it’s as simple as buttoning the top button of my dress shirt or as complicated as finishing a work project late into the evening, I’m in a relentless pursuit of personal triumph. So I push myself. You know, show MS I’m still in control and that it won’t get the best of me.

Many times, pushing myself in the face of fatigue only succeeds in bringing out the worst of myself. I come up short in accomplishing my intended goal and find myself nothing more than weakened, irritable, and defeated. All this work to try and win one over on MS, but all I did was let my fatigue contribute to the disease’s so-called superiority. 

I need to focus more on giving myself the grace to take a break and know that stopping for a moment doesn’t mean conceding to the disease. Rather, I’m rejuvenating myself for tomorrow’s victory.

I’m rather proud of what I did with my horseshoe pits in our backyard late this past June. It went against everything I used to do when facing a task, and it showed me how giving myself a break (or three) is in my best interest in truly staying ahead of MS.

I always had wanted to have horseshoe pits in my backyard. And bless Jennifer, one year for our anniversary she gave me a gift of horseshoes and horseshoe stakes. The following spring I mounted backstops, dug out the pits, and had an officially measured horseshoe court in our backyard. 

I truly am proud of it, and every year weed out the pits, pour new sand and then pitch horseshoes after work and on the weekends

But it takes a lot of work. This involves:
 
  • Going to the hardware store
  • Purchasing four 40-pound bags of sand
  • Loading the bags into the van
  • Carrying the bags into the backyard
  • Dumping the sand 
  • Raking it 

Ordinarily this wouldn’t be a hard task, but my muscles get quickly fatigued because of the MS. In the past, I forced myself to do all of this in one afternoon. And I would ignore the summer heat and wear myself out to the point that I couldn’t even play horseshoes once everything was done.

But not this year. I spaced everything out over a couple days. Weeding one weekend. Shopping the next. Hauling and installing sand throughout one Sunday. Pitching horseshoes after work the following Monday.

Never once did I feel as though I was losing to MS. I just knew I was listening to my body, respecting my abilities and giving myself the breaks I needed to enjoy the moments. 

So with more than 22 years of living with MS under my belt, have I fully accepted the fatigue it causes? Not entirely. But after this experience with my horseshoe pits this summer, I’ll say that I’m close.