Working to Get Through the Pandemic Intact

As rheumatoid arthritis (RA) patients, we constantly have to cope with the disease wearing at our joints and the damage that can occur. It can be slow and constant, like water eroding a river bed. Or it can be fast and sudden, like an unexpected waterfall.

Sometimes, if we are lucky and have good treatment, we can slow RA to a trickle and have more time with more abilities, fewer symptoms, and less pain.

Periods of worsening RA symptoms

During the last year, I feel like I’ve had the slow erosion and the sudden losses overlapping. It’s really been a battle to stay as stable as possible. While my medication has normalized my inflammation marker (c-reactive protein or CRP), my disease feels challenging. It may be the many years that I have had it or perhaps undiscovered inflammation activity (or a bit of both?).

In any case, what it feels like is a lot of bad days and some real losses, such as arm movement, hand function, and increased pain in my joints. I have felt both overall aches and fatigue, as well as specific joints flaring. It’s not a great combination and I have some complaints for management!

The challenges of navigating the pandemic

At the same time, we have this very challenging pandemic situation. (You may have noticed?!) I’ve been working from home (which has been very good for me physically by reducing the stress and exhaustion of commuting). Despite physical distancing and taking all the precautions for the virus, I’ve been keeping up with my rheumatologist and following my treatment. Yet, I feel more RA challenges than ever.

I can’t explain it except perhaps it is a combination of change and stress. Or, perhaps, just a coincidence that my RA just is crankier than ever. As I age with an aggressive disease (now more than 40 years, with much of the time lacking any effective treatment), I just think it is more than additive in its negative effects — it may be exponential.

How I support my body

My response is to be extra attentive and to do everything I can each day to support my body through this difficult time.

I exercise every day, even when I am feeling especially bad. I work on eating well. I take my medications and pay attention to my pain (sometimes supplementing with extra prednisone and Tylenol). And I’ve visited physical therapy in the last year to get help with some specific issues (such as my ankle and my hands, shoulder, and neck).

We cannot afford to neglect our RA

As RA patients, we have more than the virus to worry about. While the virus is very serious, we know (because we’ve lived it) that RA demands attention and can spiral out of control very quickly into joint pain, limitations, and body-consuming fatigue. We cannot afford to neglect our RA because it certainly will not forget us.

I need to work hard on managing my RA

While I’m doing all I can to stay safe during the pandemic, I also know that I need to work hard on managing my RA. It will likely get worse, as it has for my entire life. Just being honest about that. But as much as I can slow it and adapt to it, the better I will be when this pandemic is over and behind us.

Winning can be getting through difficult times

I honestly don’t think I will be where I was as far as my condition before the pandemic started. Although I cannot go back, I am trying to get through the pandemic with my RA as best as I can.

I know I have sustained losses and have had a lot of bad RA days, but I also know that I’m doing everything I can to sustain myself as best as possible. Sometimes we can’t win, but sometimes winning can be getting through difficult times.