“Hello Darkness, My Old Friend”
For those of you who are younger, this line may not be familiar. The rest of us are singing along to this gem from Simon and Garfunkel. As the song implies, we all have times where we visit darkness.
Our current situation with COVID-19 has plunged us all into a world of the unknown and misunderstood. Recommendations change every day in a dizzying whirlwind. We have enough trouble keeping our medications straight, adding pain medications as needed, keeping up with doctor appointments, making sure our balance is okay when we stand up and walk, and dealing with brain fog.
The unknowns of RA and COVID-19
Throw in COVID-19, which is a huge unknown, and you have a maelstrom of isolation, anger, grief, fear, anxiety, and overwhelming fatigue. Just trying to figure out which news stories to believe takes immense concentration. So now we live with rheumatoid arthritis on crack cocaine! Not that I have ever done crack, but I have knowledge of it from my experience as an RN.
It's become so easy to withdraw and isolate
Not one of us signed up for this. We did not sign up for rheumatoid arthritis, and certainly not for COVID-19. Many of you have commented on the site that your fear, anxiety, and depression are overwhelming. It becomes amazingly easy to withdraw into oneself, isolate, and become afraid to even step outside for the mail. Seeing beyond the dark cloud appears impossible.
For myself, anger and agitation are manifested frequently. Although I am an extrovert, I now have the habits of an introvert. I no longer want to talk with my friend on the phone and explain yet again why I will not go to the bar with her. I just want to stay in my home, go out on my private deck to watch my container garden, and for people to leave me alone.
What will daily life look like during COVID-19?
All these feelings are completely normal and evidence of great stress and depression. We are in a season of the unknown. Make no mistake, it is a season and will eventually end. However, we do not know what life will look like at that time. As places re-open, nothing looks like it did. What makes this season so hard is that we have no idea what our lives will look like a year from now.
Being in public spaces
I watch people go back to restaurants and I realize that I will choose not to go. I watch restaurants fail to follow distancing guidelines and I wonder why. I realize it will be a very long time before I enter a movie theater or live performance. I watch people go into grocery stores without masks and I cannot help but wonder why they think vulnerable people are not important. I wonder if they think at all.
What will a vaccine look like?
A year from now, will we have a vaccine? If we have a vaccine, will it be live or attenuated (dead)? Will I be able to take the vaccine? Will I need to stop my RA medications so that I have a good response to the vaccine? Will enough people take it so that I can re-enter my new normal? As a former public health RN, I firmly believe in vaccination. I have studied both sides of the argument. For those of us with RA, vaccination may allow us to return to some semblance of "normal". Each of us has to make our own decision.
How do we adjust to life during COVID-19?
So what will our new "normal" look like? We really do not know. I believe that good handwashing will stay with us. For myself, mask-wearing will remain until I feel comfortable. RA folks will be more aware and careful. I am looking forward to the day when I can hug people again. I miss that. But I think it will be long into the "new normal" before I can do that again. Not knowing is draining. However, knowing what to do in the here and now is most important.
Take things a step at a time
So how do we cope? How do we balance rheumatoid arthritis and COVID-19? Where is the “Stop the World, I want to get off” button? There is a saying: "How do you eat an elephant? One bite at a time." We cannot attempt to focus on everything.
Here are some suggestions:
1. Figure out what your most pressing issue is. Then call your rheumatologist’s office, ask for the nurse, and leave a message requesting a referral to someone who can help. Never be afraid to ask for help.
2. If your pressing issues are the emotions mentioned earlier, find someone to talk with.
3. Make sure you get outside for small amounts of time, just in your yard. I sit on my front porch and listen to the birds in the morning with my coffee.
4. Nourish yourself with good food, good reading, plenty of liquids, and adequate rest.
5. Spend some time with Rheumatoidarthritis.net every day. The articles and encouragement here are so helpful.
I am sure that you have many other suggestions. Please respond with those in the comments.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?