The RA-Jenga Game
Sometimes I think living with rheumatoid arthritis is an unpleasant Jenga game. You know the game where you build a tower of blocks then each person takes turns removing one, then carefully balancing it on top until the whole thing collapses?
RA does the same thing to me. It keeps adding to my load of concerns and responsibilities while removing my abilities to ideally manage these changes. I get more medications,more exercises, more side effects and chronic conditions. Yet it takes away my energy, ability to move, and bandwidth for balancing the heavy load. It adds pain, fatigue, and stiffness while hiding the tools to cope with these debilitating physical challenges.
Maintaining a balanced life with RA
Exchanging burdens with challenges
Sometimes I am afraid I will topple! For example, I put off getting a sleep study for a few years because I thought it likely I would have to use a sleep apnea machine. I just didn’t have the ability to cope with “one more thing.” In actuality, it turned out to be a lot more things—various parts to assemble the machine, finding the right mask, getting adjusted to it, and so forth. I really don’t think I would manage it without my husband, Richard. He takes care of the machine (cleaning and upkeep) and helps me to put the mask on and off, and start it every night.
Added health responsibilities
Over the years I’ve had these periodic additions to my health responsibilities. Gadgets I need to use. New treatments. More physical therapy. And these additions take away from my time and energy, although they are supposed to help with my health.
While we often feel the losses that can come with RA — loss of energy, time, health, and so forth - we don’t always think about the addition of complications and concerns. The combination is complicated and regularly throws me off balance. My tower of blocks runneth over!
When RA Jenga takes a tumble...
When I have to make a change (like adding a new medication into the rotation), I have to do it thoughtfully and sometimes slowly to make it a habit that sticks. I’ve very purposefully built my life around habits that (hopefully) support my health. This goes down to how I organize and schedule my medications, plan my daily exercises, get rest and more. Because my day is built on these planned habits, it can get upset easily and everything becomes disrupted.
The disruption of an off day
All of us RA patients experience bad days. I’ll wake up with a flare, or headache, and then I stay in bed. But this disrupts my medication schedule. Then it disrupts my sleep schedule because I need extra rest that day and then have difficulty sleeping at night. The next day I have to try to carefully rebuild my tower and move on.
Grateful for help and support
But it’s not just one day that RA disrupts with the constant taking and giving game. There are tasks I used to do easily that are now difficult. I need more help from my husband to take care of my health issues (like using the sleep apnea machine). It’s like my tower needs braces or flying buttresses! I can’t maintain on my own like I used to (or at least pretended I did).
The block Jenga game is much more fun. It’s a thrill to build, to challenge the balance, laugh when it falls and start again. The RA version is much harder with higher, more stressful stakes. I’m fortunate to have good support so that when I fall, I have a softer landing. And when I need to rebuild I have good help putting the pieces back together.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?