As anyone who has rheumatoid arthritis knows, swollen and stiff joints aren’t the only side effects of the disease. RA can have an enormous impact on your mood and mental health, your ability to work, and how much you get to do the things you love.
I was a salon owner and stylist for over 20 years until 2010, when I was diagnosed with RA. This is what my average day-to-day looks like.
I wake up to both dogs licking my face frantically. They’re hungry and it’s time for me to start my day. The first thing I do before even stepping one foot out of bed is take my pain medication. By the time it starts to kick in, I can usually make my way down the stairs to let the dogs out. I check my calendar that I keep beside their bowls to see what appointments I have going on today. Brain fog is no joke. If I didn’t keep notes and calendars around, I would forget everything.
A mental health appointment is on the agenda today. Most people I know who are sick don’t even take into consideration that mental health is half the battle with this disease. I have completely lost my identity since I stopped working, and I am fighting to keep the anxiety and sadness away. I know the better I feel mentally, the easier it is for me to cope with all the changes my body goes through on a daily basis.
I’ve made my way to the gym. I like to take classes, like cycling. It makes me feel like I’m a part of something and I’ve met some pretty cool people. Having this illness is very lonely. One cannot just make plans to go see a concert or a hockey game without wanting to lay down, or even get emotional from the pain. There are days when I walk into the gym while wiping tears from my eyes, but when I leave, I feel amazing. I promised myself I would never stop moving, no matter how I felt.
There is a compromise that I have with my body. When it feels completely awful, I do something light. But when it feels good enough, I tackle all I can to see how far I can push myself. Having this outlet has been so good — not just for my body, but for my mind as well. Exercise in any form is great for depression and anxiety. It’s also a nice social outlet.
With mental health appointment completed and a class at the gym accomplished, what really needs to get done around this house? Laundry? Vacuuming? Trying to prioritize chores is an interesting concept — part of my personality is wanting everything to be finished, now. I’ve had to relearn how I do everything. Laundry will have to be done here and there, and the vacuuming will take all day with all the breaks I have to take in between rooms. I’ll tackle the bathroom today, but still obsess about the rest until it’s done.
Dinner time for the dogs. I’m so tired — my back hurts, my hands hurt … ahhh.
I’m fumbling trying to serve the dogs food with this fork in my hand. It seems the simplest things are really a production for me. Hard to believe I used to own a salon and stand for 12 hours doing hair on a daily basis. Thank god my brain goes on autopilot, or else all of this would drive me crazy. Or has it already?! I guess it becomes a sort of game. How much can one stand everyday with pain, swelling, unstable joints, and all the mental aspects of losing who you are and who you used to be?
Time to sit down and catch up on some shows. I’ve done some stretching here and there in between episodes so I don’t feel like the Tin Man. My mind is still running about all the things I didn’t get done today. Having RA is a full-time job. Planning the day, prioritizing things, attending doctor appointments, and then trying to do things for myself, like taking a hot shower or even washing my hair. I’ve even been wearing this shirt for the past three days! Help!
I have fallen asleep on the couch. The dogs need to go out one more time before bed. I stand at the top of the stairs, trying to will myself down. It was much easier this morning, but now it seems impossible to handle.
Trying to get comfortable in bed is like a game of Twister. I’ve got to make sure there’s only one pillow under my damaged neck, the body pillow is between my legs for my aching back, and my socks are off so I don’t wake up in a pool of sweat in the middle of the night from my fevers. And, of course, I coax my dogs into sleeping next to me for comfort.
My day comes to an end, and I try to get some sleep before it all begins again tomorrow. A challenge I accept daily. I will not let this disease beat me down. Though I have moments of weakness, tears, and fears of giving up, I awaken each day with the will to tackle whatever life decides to throw at me, because I will never give up.