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.

Several years ago, I was on the lung transplant list. When my lung function stabilized enough for me to get off the transplant list, a) we bought the motorhome, and b) I decided that if I wasn’t “busy dying,” I had better get busy living! To me, this philosophy and approach mean I intend to live my days to the maximum. As I’m able, I intend to assess my capabilities each morning, afternoon, and evening and live up to whatever potential I am up for. However, as some of you know and many of you can guess – this is an imperfect system. I am not always skilled at knowing what I’m capable of. Cut back to that trip two weeks ago.

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.

At some point on the walk, I don’t know if we were halfway or two-thirds of the way through, something disastrous happened, but I didn’t recognize it for the disaster it was at the time. The terrain changed. The ground shifted from being hard, packed, easy-to-walk-on solid ground, to sand. I don’t mean the tide just went out, relatively hard wet sand, I mean loose, shifting, sink into it, dune sand. Nope. Just no. I should have looked ahead, seen that there were more than 20 feet of it, and said, “Sorry, I need to turn back.” I could have said, “Dang, I didn’t know the trail turned to sand. That’s too bad but I can’t manage that.” I could have said any number of things and my friends would have willingly accommodated me. However, I didn’t.

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.

It is familiar, in these times, to turn on myself and start in with things like, “Why didn’t you?” or “You should have just…” I’m working to trade in the habit of self-criticism for a habit of self-compassion. It would also be easy to take this failed attempt at stretching myself and just shrink – not try to take a walk the next time I could. I’m not interested in that. I’m not interested in knowing how small my life can be – I’ve already tasted that menu and I’m not interested in eating there. I once told my therapist that I felt as though I was a piece of paper that had been folded in half over and over again until it was getting too hard to fold down any smaller. It’s so easy when I miscalculate my limit and overshoot to believe that I need to shrink. That isn’t the truth. The truth is I need to recover and recalibrate.

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.

Life doesn’t look much like what I expected it would look like, at this point. And yet, I am worth it. I am worth trying for, I am worth making mistakes for, I am worth going back to the drawing board scrapping my previous plan and beginning again for, I am worth recovering from flares and injury for, I am worth fighting for and reclaiming whatever bits of joy and beauty I can excavate from the rubble of this tired, pain-riddled, hard-working body of mine. And so are you.