RA - The Time Bandit
Time. It’s something all of us only have a limited supply of and there’s nothing on Earth, short of a DeLorean going 88 miles per hour, that can give you more of this particular commodity.
Rheumatoid arthritis (RA) is a notorious burglar of this scarce resource and the real tragedy is that chronic illness steals away time in so many different ways that it could play a supervillain in a sci-fi blockbuster.
Anyone who knows me knows that there is one thing I hate more than anything – wasting time. I can’t stand it when others waste it for me, but I am twice as hard on myself when I slack off or spend time doing something inane like dancing around my room singing show tunes. Err, I mean, that’s just an example, I don’t do really do that. Often.
With RA, tasks take more time
Rheumatoid arthritis and other chronic illnesses have perfected the art of sucking time down the drain and it does that in a number of ways.
First, the illness makes everything take more time than usual. Want to bake some bread? Well, it’s going to take you twice as long to knead the dough because your hands are riddled with arthritis.
Want to write an article? Rheumatoid arthritis brain fog makes concentrating or even coming up with an idea almost impossible on some days, but you try anyway, wasting the entire afternoon.
Have to cut the fingers off regular gloves that you found at the bottom of the jacket closet in order to turn them into compression gloves because you can’t remember where you put the RA gloves down last but you can’t find the scissors so you use a kitchen knife and almost cut your finger off? Well, that last one’s a little specific, but it still takes time that I wouldn’t have normally had to spend if RA hadn’t thrown a wrench into the works.
RA and chronic illness make all activities take more time than they normally would and that can add up. Sometimes resulting in hours spent on the most mundane of tasks.
Unpredictability ruins our plans
As if that wasn’t enough, RA has another fun little trick up its sleeve – unpredictability! Yes, unpredictability is the hallmark of chronic illness, and that means planning ahead is about as useful as an ice machine in the arctic.
What’s that old saying? "Man plans and God laughs"? Well, with RA, it’s more like “Man with RA plans and God almost chokes to death on his churro because he or she is laughing so hard that they can’t even see through the tears.” (A warm, fresh, churro is about as close to heavenly as you can get.)
Our plans end up worthless
So, not only did you lose the time you spent making plans, but when those plans end up worthless. You have to spend even more time coming up with a new plan on the spot which takes twice as long because you’re in a hurry. Tick, tock, down the drain goes the clock. And, before you know it, half the day is gone before you’ve even gotten up, showered, and dressed.
Time spent on medical care
Yet another way that RA eats up time faster than Pac-Man at a power pellet tasting is medical care.
Chronic illness takes a lot of managing, and that includes but is not limited to: doctor’s appointments, pharmacy trips, specialist visits, physical therapy, spending hours on the phone fighting insurance, mandatory exercise, bad days of recuperation, spending hours on the phone fighting the doctors – the list of disease-caring tasks goes on and on, and those things take time.
Our whole day is spent
Sometimes a trip into Manhattan just to see the doctor for a mere thirty minutes can eat up the entire day if traffic is bad. The entire day - not half, or a part, but all eight hours or so of actual, usable, time. And, that doesn’t even count stopping on the way home to pick up any new meds.
Chronic illness is a 24-hour-a-day job, and it takes time to do the things that need to be done in order to keep your head above water.
By now you’re probably saying, “Still, Dan, that leaves you at least an hour or so a day to do things!” Well, well, well, lucky me! A whole hour! What am I, the Sultan of Brunei? If you refer to the part a few paragraphs previous to this, you’ll see the whole, “RA makes things take more time,” thing, so let me be explicitly clear – an “hour” of chronic illness time is equivalent to about ten minutes of normal time. What can you get done in just ten minutes?
Managing our expectations with RA
So, what do we do? What’s the remedy? Is there even one or is it like the show Lost and there really is no answer?
Well, you’re going to have to spend some time working on managing your expectations. Yes, I see the irony in what I wrote - what are you, the ironic police? (Note to self: idea for a show, Ironic Police – go around telling people most “ironic” things aren’t really irony, which is actually ironic itself.) Unfortunately, it’s necessary.
Accepting limitations with time
You have to find a way to accept only having four productive hours a day. You have to find a way to accept that some days, you’ll wish for four productive hours when you barely get one. You have to find a way to accept that, even if you plan your entire month out, that schedule will likely end up being thrown out the window by day two. On fire.
How? That’s something only you can figure out, but it’s an important step to accepting life with chronic illness. Now, I must go, as I’m rapidly approaching my four-hour cut-off and I don’t wa… Talk soon.
How often you do experience an unexpected boost of energy?