RA Daydreams: A “Pause Button” for the World
Living with rheumatoid arthritis can feel like a nightmare, which sometimes leads me to daydream about things that would make this journey a little easier.
There’s the pain from the disease that can make it hard to sit or lie down comfortably, much less tackle a project or task. Then there’s the fatigue that can feel like a heavy weight pushing me down and pinning me in place. There are also the frequent illnesses I’m susceptible to both because my immune system is confused and because immunosuppressant drugs are used to calm it down. Lastly, there is all the time spent at doctor’s appointments and at the infusion center treating the disease.
All of these symptoms, side effects, and treatments reduce my ability to be as productive as I strive to be. Meanwhile, our go-go-go society keeps going, and it’s easy to feel as if I’ll never catch up. Wouldn’t it be wonderful to just be able to push “pause” on the world and catch up while everything else is frozen in time?
Dealing with flares
If I had a pause button for the world, it would be incredibly valuable during flares. For instance, I would never again have to miss an important event. Rather, I could freeze everyone else while I rested and tended to my pain and fatigue, then un-pause everyone once my symptoms subsided, making it to the party/wedding/celebration without issue. Likewise, I could pause the world and tack on a couple of days to a weekend so that I could get the rest that I need and still ensure all the laundry, chores, and errands were completed before Monday.
A pause button for the world would completely change the experience of working full-time while having a chronic condition. When RA ramps up during the work day, I could hit the pause button, go home and take a long nap on my heated mattress pad, then return to work and once again set my colleagues in motion without having missed so much as an email, let alone a meeting. During a long day of computer work and the pain that sitting for long periods of time can cause, I could hit the pause button, go for a 15-minute walk, and then return to my desk without missing a beat. When illness hits I could pause the world rather than take a sick day, avoiding missed pay and the worry that my employers might see me as less reliable for having a disease that makes me susceptible to infection.
I would also use my pause button when RA clashes with parenthood. There are times when my young children inadvertently hurt me by jumping on my lap, running into me, or grabbing my hands or arms. While I teach them about being gentle with mommy when my bones hurt, it doesn’t eliminate their accidental infliction of pain on my inflamed joints. During particularly painful moments I can’t always stifle a sob or hold back a tear. In those situations, I would love to be able to hit the pause button before my child takes in my reaction, give my body the space and rest it needs to recover from the impact, and then return to my child and un-pause the world when I’m in a better emotional state. This would save them from the guilt of doing more damage than they should be able to do in being playful and energetic around a full grown adult, and would save my heart from the toll their guilt takes.
Rheumatoid arthritis frequently and unpredictably forces me to pause. It would be so helpful if I could pause the world when RA puts my life on pause.
If you had a pause button for the world, when would you use it?
Check-in: As we start a new year, how are you feeling?