Self-care is a crucial part of daily life when you have a chronic illness like rheumatoid arthritis. But what happens when your usual self-care routine becomes as compromised as your immune system?
Just a few weeks ago my full-time job was taking care of my chronic illness. Now it seems that my full-time job is trying to shield myself, my son, and others from a coronavirus pandemic. My province is the biggest hot spot for Canadian COVID-19 cases right now. It seems like practically overnight, my life suddenly has become even more lonely and complicated than it usually is.
However, I am lucky in that having a chronic illness has definitely prepared me for this long stint of self-isolation.
My Current State of Mind
Late last week, my rheumatologist called me only minutes after I requested my Uber to come pick me up for my monthly biologic infusion. I could hear an urgency in her voice that I had never heard before. Two of the doctors at my clinic have been exposed to COVID-19, she explained. She suggested that I self-isolate. (Yeah — good thing I already had been doing that for almost two straight weeks.)
My biologic infusion would need to be switched to a weekly injectable form. I am not stopping my medication — I just have to adapt the delivery method to limit my exposure to the outside world.
My social worker, general practitioner, and rheumatologist are thankfully offering telehealth services to keep people like me at a lower risk from exposure to the virus. Any opportunity to take telehealth service, I will take instead of having to go somewhere in person.
I cancelled my son’s dental appointment. My chiropractor, social worker, occupational therapy, and physiotherapy appointments are on hold for the time being.
Learning to Adapt Is the Name of the Game
In times like this we must adapt to current situations. There’s no other way to get through it. Living with rheumatoid arthritis, I’ve learned a few ways to adapt over the years (admittedly though never during a pandemic). But the way I am adapting my everyday routine is new to me — as it is to everyone — because I am taking some of the most extreme precautions I have ever taken in my life. Self-isolation, no play dates for my son, no non-essential outside trips, no dating.
Did I mention how lonely all of this is?
I am only grocery shopping in the first hour of the store being open to avoid as many people as possible. My health relies a lot on fresh fruits and vegetables. I am making some of my favorite healthy meals and freezing them so I can minimize how often I have to grocery shop and also not rely only on processed foods, which can spike inflammation for me. It’s a good thing I love to cook. (I also stockpiled a bit of chocolate. Hey, times are tough. I made sure to leave enough for everyone else though.)
How I’ve Adapted My 3 Favorite Self-Care Techniques
Physical Activity and Exercise
I admit I’ve become a bit of a gym rat over the last couple of years. Exercise has helped me lose 60 pounds I needed to in order to better manage my RA. It also helps me cope with stress. I can’t go to the gym right now, which is really hard for me.
My 7-year-old son says I am his favorite athlete because I manage to exercise regularly with rheumatoid arthritis. Well, now I need to be his hero in the time of COVID-19. I can’t be his hero without taking care of myself too.
Each time I’ve had to stop my normal exercise routine, I miss it. Exercise doesn’t just help with my joint pain. it also helps reduce my fatigue, control my appetite and keep excess weight off, lower my cognitive dysfunction (brain fog), and lift my overall mood. That’s something I definitely could use a little help with right now.
So I’ve been exploring at-home workouts. Websites like FitnessBlender offer many exercise options from fitness pros. I only do the moves my body is capable of. If there are ones I can’t do, I just do a mix up of the ones I can to keep up. If I can’t do a full 30-minute workout then I will break it up into 15 minutes or 10 minutes throughout the day. This helps also relieve some pain when I’ve been sitting too long reading, writing, painting, glued to the news, etc.
I’ve been aiming for a mix of Pilates, Zumba, yoga, strength training, and range-of-motion stretches. I’ve invested in equipment over the years: resistance bands, a stability ball, a yoga mat, an adjustable step, kettle bells, dumb bells, and ankle weights.
Some of my favorite moves include squats, lunges (I hold onto my kitchen counter), bridges, planks, bird dog, back extensions, elbow to knee, and others. I am definitely not doing push-ups or sit-ups with my sore achy joints in my wrists. Everyone’s pain points and affected joints are different, so you may need to experiment to find out what moves work for you. Consistency, for me, is key to making exercise part of self-care.
I go for a daily walk; maybe two if my body or mind need some moving. My son comes along and this also makes sure he doesn’t play too much on his PS4. We walk only in areas where we will have minimal contact with people. Sometimes I kick a soccer ball around with my son (though my RA doesn’t let me do it for very long) or I take him out on his scooter or bike.
Sauna and Baths
I can’t use my gym’s sauna anymore, so I have been taking a hot bath with Epsom salts, essential oils, and really any luxurious bath additive I can get my self-isolating hands on. I soak for about an hour and I make the temperature really hot. I want a good sweat, like I get in the sauna — but everyone has their own preferences. Afterward I have a nap or go to bed because I’m a little too relaxed after for much else. Adding a little bit of CBD oil can really help relax me on the tough days.
I also have massage balls and rollers for when my back gets achy and no one is around to help loosen it.
To help fill these very long days, I write, I paint, I cook, I spring-clean, I play with my son and my cats. I tune the world out and put on Ru Paul’s Drag Race to tune out reality. Occasionally I dance like no one is watching — because, well, no one is.
If I need to have a moment and cry, I do it. (But I also try to keep it out of my son’s sight as I don’t want to scare him more than he is already.) I think many of us are having similar emotions of fear, anxiety and sadness. I know it’s only natural that I am feeling overwhelmed, scared, and anxious. My depression is creeping in.
I am experiencing vivid nightmares and don’t know how to answer difficult questions from my son. I don’t think I have felt this uncertain since my diagnosis of rheumatoid arthritis five years ago when I was thrown into life with an incurable chronic illness.
In times like this, I am grateful for telehealth services. I make sure I keep a close eye on my emotions. I take moments to breathe. I talk to my friends and family.
I have found advocating for immunosuppressed patients through social media to be a rewarding experience (through articles like this and this). It makes me feel closer to my community. It also helps me feel like I still have some control in my life. I don’t give up without a fight.
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