Living the Biggest Life I Can With Chronic Illness

A few weeks ago I had the tremendous pleasure of getting out of town for the weekend. My wife and I own a tiny motorhome and because she is able-bodied and willing to do so much of the (literal) heavy-lifting, hauling, and driving, that it takes to get us out of the house and set up, we are able to go to the coast and have a change scenery. It is such a lucky and beautiful gift.

We have friends who joined us at the state campground, and for two days we enjoyed their company, had leisurely days, saw the ocean, and let our pups enjoy some time playing together, too. Living with multiple chronic illnesses including myalgic encephalomyelitis, fibromyalgia, pulmonary fibrosis, chronic migraine, and polyarthritis, (among others), I have learned a lot over the years about how to pace myself. I know, for example, that I need to rest up for trips like this, I need to attend to my needs during the trip (advocate for things like breaks, naps, changing plans mid-course, etc), and the toll of a weekend trip can take days, sometimes weeks, to recover from. These are the costs.

Although I am quite limited in my function, I have been training for the last two years by doing pulmonary rehab, riding a stationary bike, and taking the slowest of strolls in my neighborhood. I am now able, on a good day, at a snail’s pace, to walk two miles. (I used to climb mountains and I am so damn proud of these two miles — they may as well be Everest.) Before our trip, I had looked up some trails and found that there was a one-mile hike not far from our campsite. It was a loop (handy) at sea level (critical for my lungs) and had almost no elevation gain (also critical). My wife got out in her kayak and our friends decided to go for a walk with me. They were prepared to walk at my pace, so off we went.

I trudged. I slogged. I panted. I stopped – again, and again, and again – probably every 15 feet. But I pressed on as though I was storing up points or crowns in heaven, and I finished. It took everything I had (and more) to make it back to the trailhead and that night I woke up in searing pain. My hip (in particular) but my legs, in general, were on fire. I could not get back to sleep. No amount of my breakthrough meds even touched the pain.

We went home the following day and I can hardly remember leaving. I didn’t help, I barely moved, I was of no use because I sent my body into a flare. I remember rocking, I remember crying. That night my hip and joint pain was an eight on the pain scale. There was no sleep for me and then the cycle of pain>sleeplessness>worse pain>inability to sleep was locked in. On our second day at home, my wife called our family doctor who came and gave me an injection which allowed me to get the first rest I’d had since doing myself in. I didn’t even get out of bed for another four days. It was another week or more before there was some normalcy and routine to my days again.

Yes, my life has limits (in truth, everyone’s does, we are just forced to reckon with those limits in more obvious ways). Those limits are variable and change from moment to moment. I am interested in figuring out where my limits are and living right up to them. I want to maximize what I’m doing each day and live the biggest life I can.

I know this isn’t a simple task, but I’m worth it. It means that I get it wrong sometimes and I pay dearly. But I can’t think of any reason I’d rather get it wrong. I’d pay all over again to see that heron majestically fly out of the lily pad studded pond up into the sand of madrones before I’d chose to sit on the couch all weekend. So, I guess that’s the messy truth, in my world, in many of our worlds. The cost of miscalculation is high, but what price am I willing to pay and for what things? Once I know those answers, I can start proceeding in the direction of the life I meant to be living – with all its concessions, accommodations and modifications.