The vacation photos you don’t see: Vacationing with chronic pain and fatigue

Our vacation photos are much like those of other families: the three of us smiling as we do fun things amidst beautiful scenery. To look at my Facebook page this week, you might imagine we spend most waking moments of our nine-day trip kayaking, canoeing, fishing, or hiking. 
But there are many images you don’t see, hours of time during which I don’t take photos because any moments I might want to capture are sparse and far between. 

Vacationing with chronic fatigue makes for days like this.

Like now. It’s almost 3 p.m. and I’m sitting on the deck of our rented cabin, looking over a pretty lake. I am alone. Our toddler is taking her afternoon nap, and Mark is also asleep, again.  

He’s gotten up twice today. Each time he has sat down with his head in his hands, then after several minutes given up and gone back to bed. His eyes are puffy and bleary. He’s exhausted, he says, and he hurts but can’t describe exactly where. If I asked the right questions, I think he would agree with the medical term “malaise” to describe how he’s feeling. Out of the little person’s earshot, he explains it more succinctly: “I feel like shit.” Then he kisses Naya and me on the tops of our heads and disappears back into the bedroom. 

Yesterday was an amazing day. I packed snacks, sandwiches, and Gatorade, we donned light layers and sturdy footwear, and we headed for the trailhead of one of our favorite hiking areas. Our goal was to hike to a spot known as Dry Falls, have lunch there, enjoy the view, hunt for frogs, and hike back out. 

There was no question of whether 3-1/2 year-old Naya could make the entire hike on her own two feet. We knew there would be some carrying involved, and that it would fall on Mark to do that carrying. We decided it would be worth it. 

It was a perfect day, with gorgeous blue skies and gentle breezes, warm in the sun and cool in the shade. The scenery of soaring pines and the shimmering lake below rocky bluffs was spectacular. We marveled over squirrel-shredded pine cones, unusual pebbles, and hardy wildflowers. Naya gamely clambered over lichen-covered rocks and twisted tree roots while our German Shepherd gleefully trotted along, nose twitching and outsized tongue dangling. 

If only every day of vacation could be like this.

Lunch overlooking the falls was exceptionally tasty after the strenuous hike, and the post-meal frog finding excursion was fascinating. Eventually, when Naya stumbled on a rocky embankment and began to whine, Mark and I exchanged glances and gathered our gear. The whining was our cue that it was time to make the hike back to our vehicle. Mark hoisted Naya onto his shoulders and we set off along the trail. 

Hiking rough terrain with precious cargo means pain and fatigue will follow.

What was simply a rugged trail when Mark was fresh and carrying a lightweight daypack became treacherous with the onset of weariness coupled with a 30-lb. child sleeping atop his shoulders. I followed behind, choosing my steps through the rocky terrain carefully, feeling the strain in my knees and thighs while being worried for him. When we paused at the bottom of a tricky descent, the strain was clearly evident in his face. “I’m going to hurt tomorrow,” he said. I urged him to stop and rest against a boulder, but true to his nature, he refused, saying, “If I stop, it will just be harder to get up again.”

I think we’re still working to accept the fact that with Mark’s Gulf War Illness–chronic fatigue, fibromyalgia, and irritable bowel syndrome–he just doesn’t get two good days in a row. Taking full advantage of one strong day to live life “normally” means giving up one or more days afterwards. Even on good days, we rarely have evening campfires during our northwoods vacations, because Mark is too tired to stay up much past 8 p.m. Campfires aren’t much fun without him.

We both know we are richly fortunate to still be able to take trips like this one. A decent day here and there is more than many ill veterans get. But it’s still hard to accept, and in some ways harder yet knowing that the good days probably look so normal to outsiders. If we have days when we can hike, fish, and paddle, everything must be fine, right?

The thing is, when living with Gulf War Illness, good days come with a steep price.

I pray that tomorrow is a better day. 

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