Life In Fits & Starts
Having a chronic illness like rheumatoid arthritis does something that even those who suffer from it may not realize – it slows everything down while at the same time speeding things up. Impossible you say? Well, that that I say: meh. From days where you have to hit pause outright, to the good evenings where you work twice as fast as usual to get it all done: time flows differently when you have a chronic illness and life, well, it comes in fits and starts.
Time and chronic illness
Sure, even healthy people would describe their life as having peaks and valleys – times when things move fast and change quickly and periods when things are steady and slow. That’s perfectly normal (or so I’ve heard), but life with a chronic disease like RA is even more polarized, with the ups and downs apportioned much less evenly. It’s like walking in quicksand for most of the time and then, every now and then someone throws you a rope. Or a stick. Or a plastic candy cane. Whatever’s handy.
Making the most of it when we feel better than average
Point is, from time to time we get to crawl out of the muck and when that happens, it’s “let the good times roll,” baby. Well, not roll, exactly, but shuffle. Let the good times shuffle. Well, average times really. Ok, ok, let the average times shuffle. Point is, we have to get in as much as we can during the good, err, average, times, and that means life double-time.
Chronic illness distorts time
Of course, all of this slowing down and speeding up results in a life that’s lived in disparate bits and pieces. When you spend three days in bed because your knees just won’t cooperate and then finally have one good evening, you do your best to do all the writing you can, taking care of the bills, cleaning up your house, and cooking dinner for three days and freezing it, all in one small stretch of time.
Our life ups and downs are distilled bursts of valleys that sink lower and peaks that rise higher than most healthy people ever experience. Three days of work in five hours is a talent only those with chronic illness truly excel at. As you may have guessed this can result in several outcomes, the best of which is getting everything done with an adequate quality level. Like a B+. Most times, though, you either rush through and quality suffers, or you push through the encroaching pain and fatigue and press your body into service far longer than it should be. Either way results in a situation that isn’t ideal, but you have no choice. Kind of like birthday sex when you’re married – whether it ends up in smiles or separate corners, it has to be done.
Still getting up to face each day
Living life in slow motion light speed takes an emotional toll as well. Maybe I should have called this post “life interrupted,” because it feels like that most of the time. RA has pissed all over so many opportunities in my life that I feel like a cat lady’s antique rug. Yet I keep getting back up for the next punch, some would say it’s perseverance, some would say it’s idiotic, but I just call it Tuesday.
The psychological toil of getting knocked down again and again and then racing to get things done expends more emotional fuel than most people even have. It takes a great fortitude to get up every day knowing that at any time the floor could collapse and disappear from under you. It’s like a real-life video game – you have to get all the treasure (work done) before the bridge collapses and you fall down to where the monster (RA flare) is. It’s exhausting.
Remembering the big life moments
Living life super slow or ultra-fast has another consequence as well – all your big moments and memories, the way that most humans mark times in their life – usually end up being more of the bad stuff than the good. If someone asks me “hey do you remember 1997?” The first thing I’d do is think back to 1996, when I got my first hip replaced and try to remember what I was doing around then. It’s a bit morbid, I know, but those of us with chronic illness like RA often have major illness events like that.
It’s rarely the sped-up, fast forward parts that get remembered. Those go by so quickly that it’s difficult to process and catalog all the feelings and events until afterwards, and by then we are usually on to the next crisis. It’s like living on an island in the middle of a sea filled with acid spitting sharks with machine guns – even when you find a fresh coconut, you see the dorsal fin of the acid machine gun shark in the distance and its’ never far from your mind, distracting and looming. That tends to put a damper on the coconut and taints all the memories that go along with it. Get it? To sum up: coconut good, acid gun sharks bad, impossible to make purely pleasurable memories. Great.
RA and chronic illness equal concentrated bursts forward followed by long intervals of stunted movement, like a slug who smokes crack. It’s a life that I wouldn’t wish on anyone, although if I’m being honest the one plus is that it’s never uninteresting, that’s for sure. Then again, by now I’d be thrilled to live one of those nice, boring, unexamined lives that I keep hearing about. Maybe. Talk soon.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?