It’s the Little Things
Rheumatoid arthritis can be about the big things. It can be about joint replacements; wheelchairs; inability to work; rifts with spouses, family members and friends who don’t understand; the decision of whether to have kids; and how to afford expensive medical treatments. It can loom very large in the most important decisions we make. Yet, this disease is also insidious, and can creep into the minute details and tiny decisions of an ordinary day.
For instance, when I go shopping I almost always get a cart. Unless I’m making a quick trip for a single, lightweight item, I get a cart, even if I’m only buying three or four things. The shopping baskets, which for most people are more convenient when purchasing just a few items, put far too much weight on my shoulder and fingers or elbow. I have to have a cart, even on the days when I have to push it with my forearms because my fingers are too tender. Once I begin to shop, my RA factors into my purchases. Oftentimes the larger the quantity, the better the value. However, no matter how low the price on a giant bottle of laundry detergent might be, I won’t buy it because it would be too painful for me to lift when washing each load. The same goes for milk, which I always buy in half-gallons even when purchasing two gallons worth of milk. If I’m shopping for a purse or a bag, I have to take the weight of the bag itself into consideration, as anything too heavy is going to become unbearable on my shoulder once filled with all the items it’s designed to carry. When I make it to the checkout lane, emptying the cart onto the conveyor belt can take me twice as long as a typical shopper if my hips are acting up. As the cashier is ringing up my purchases, I will curse myself if I’ve forgotten my canvas shopping bags. This isn’t because of the environmental impact of wasted resources, but rather from the weight those plastic shopping bags will place on my finger joints as I load and unload them from my car.
In fact, from the start of any given day, my RA will be a factor in all sorts of small ways. If my joints are inflamed, it will take me twice as long to get ready. I’ll have to sit down on the bed to put on my underwear and pants, as balancing on one leg even momentarily can be very painful. If I forget my socks, I curse the distance between my bed and the dresser, as even these few extra steps feel like too much. Then when I’m deciding which shoes to wear, fashion cannot be the primary factor. Rather, I have to think about which joints are troubling me most, and wear the shoes that will best accommodate them. As truly comfortable shoes are very hard to find, I have an array of footwear to select from: the pair that feels great on my bunions but hurts my hips after a couple of hours, the ones that are good for my hips but hard on my knees, and the ones that put a little extra strain on my ankles but feel fine elsewhere. On a bad RA day, I will choose my outfit in reverse, first selecting the shoes that will feel the best and then picking out clothes that match the shoes. When I’m finally ready to go out the door, I’ll fill my bottle of water only halfway full, as on a bad day a full bottle of water simply adds too much weight to my load.
Even having fun can be fraught with all the minor impacts rheumatoid arthritis brings. Recently a friend asked if I wanted to park at her house and walk the half-mile to the restaurant together. I told her I would have to wait and see how my ankle was doing, and would let her know an hour before our dinner plans. My husband keeps wanting to go on a family camping trip. While I love the idea of my kids experiencing the great outdoors, the thought of sleeping on the ground, even with an air mattress, seems far from fun. RA even factors itself into seated activities. If I am reading a book, I have to rest it on top of a pillow because even the weight of a slim paperback quickly becomes troublesome. If I’m at a concert or performance, clapping my hands can be painful, and I’ll opt for calling out a “Bravo!” instead.
Even in the comfort of my own home, I constantly have to accommodate my joints. Kicking off one's shoes seems like a great way to segue into relaxation, but walking barefoot forces my ankles, knees and hips to absorb too much shock. I have to wear thick slippers even if I’m just walking from one room to another, or else I’ll feel each step through my joints. I’m always asking my husband to open jars or put a pot of water on the stove, as the strain can be too great. If he isn’t home, the kids very well might be in for the treat of a pizza night, because sometimes I just can’t get through meal preparation flying solo. Once it’s time for bed, if my disease activity is high even the weight of the covers can be too much pressure on my joints, and I may have to turn up the heat rather than suffer.
These are just a few of the examples of how rheumatoid arthritis is present in the majority of my decisions, large and small. RA is one high-maintenance disease, rarely letting me forget it’s there for even an instant.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?