A Step Through Time with a Degenerative Disease
When I woke up today, I was feeling okay. I didn’t have too much morning stiffness, and none of my joints were particularly painful. I put on my slippers and went to the kitchen to make coffee. About 15 minutes later I was walking across the room when all of a sudden pain went through my constantly inflamed toe joints, as lifting my foot to take a step caused the slight weight of the slipper to press down against my bunion. I’m very familiar with that sensation when trying on shoes (it’s so very difficult to find shoes that aren’t painful) or after wearing any of my “comfortable” shoes for several hours. Yet, having this painful jolt stem from slippers was a new one. I mean really, even slippers? Even slippers have to hurt? Slippers represent comfort and relaxation, a symbol of the end of a workday and the beginning of a restful evening. However, when you have rheumatoid arthritis, even an emblem of comfort can become uncomfortable.
As rheumatoid arthritis is a degenerative disease, I have seen differences in my body in the 15 years since my diagnosis. I used to love walking barefoot in the house. Slippers used to be a thing of wintertime, when my feet became too chilly to go without cover. About 12 years ago I rented an apartment that had tile floors throughout, and I immediately became aware of the impact of the hard surface on my bones. I was no longer able to walk barefoot, as each step on the ceramic sent shooting pain through my knees and hips. I only lived in that apartment for a summer, and was grateful to move to a house with hardwood floors, where I could once again go barefoot. However, as the years have worn on, the weight of my steps has become heavier and heavier on my joints. For at least the last three years, I only walk barefoot on occasion and for very short distances, such as from the bedroom to the adjoining bathroom, and even then I regret not putting my slippers on. Each un-cushioned step rocks through my knees and hips, sending jolts of pain through those joints, even on the softer surfaces of hardwood floors or thin carpet. Slippers have become not just a symbol of comfort, but a requirement for it.
Therefore, today’s pain of having my toe joints scream in outrage at the ever-so-slight pressure of the slippers against them feels like a loss. I know that I am very fortunate to be walking, as rheumatoid arthritis can leave patients relying on wheelchairs, walkers, and canes for mobility. At the same time, the thought of each step causing pain, even in what should be the comfort of my own home, is a challenging thought to tolerate. I have resigned to giving up high heels, backless sandals, and a host of other footwear, but the thought of even my slippers giving me pain makes me realize that my tenure without any RA-related surgeries may be a temporary one. My rheumatologist told me a couple of years ago that the only thing that could be done for my bunions was surgery, and that I would know when I got to that point. I’m not there yet, but today is the first day where I fully realize that this may indeed be in my future. This is why it feels impossible to ever fully cope with having rheumatoid arthritis. It is such an inconsistent, unpredictable and degenerative disease that, like an ocean, it is never exactly the same. Just when I feel like I’m coping well with the stage I am at, another wave comes, upsetting my balance, and leaving me to deal with an ever-shifting reality.
When was your last flare?