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Hand holding wooden block attempting to place it on a tumbling tower of blocks

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • tckrd
    1 month ago

    That was a wonderfully accurate and scary article. Thank you for putting this into such wonderful words

  • Kelly Mack moderator author
    2 weeks ago

    Thanks tckrd! Most appreciated! 🙂 Be well! Best, Kelly (RheumatoidArthritis.net Team)

  • REDBONE
    1 month ago

    EVERYONE PLEASE FORGIVE ME FOR TYPING IN ALL CAPS; I’M NOT ANGRY AT ANYONE, NOR AM I YELLING! I’M NEARSIGHTED, SO I CAN’T SEE WELL UP CLOSE(GETTING NEW GLASSES SOON) AND NEXT I CAN’T TYPE WITH MY THUMBS B/C IT WOULD LOOK SOMETHING LIKE THIS PXY%#@_%<=^^@%^&%! I CAN'T MANEUVER THEM WELL SO I TYPE WITH (1)FINGER, MY POINTER, ON MY RIGHTHAND. MY POINTER FINGER IS BENT TOWARDS THE RIGHT WHICH USUALLY HITS THE LETTER TO THE RIGHT OF IT INSTEAD OF THE LETTER BENEATH IT! AGAIN, I CAN EASILY HIT THE CAPS BECAUSE THEY'RE LARGER THAN LOWERCASE! NOW WTBS, KELLY, I DO RELATE!☺☺☺ I'VE HAD RA SINCE 1991, BUT WASN'T DIAGNOSED 'TIL 2000, AFTER I GRADUATED FROM FASHION DESIGN SCHOOL! IT MIMMICKED SO MANY OTHER THINGS, SO IT WAS DIFFICULT TO DIAGNOSE! MY WORLD WAS SHAKEN, SO I'VE HAD TO REBUILD THE WORLD I ONCE KNEW TO SUIT MY NEW ONE; THIS INCLUDES MY NEW WAYS OF DOING THINGS! WHEN POSSIBLE BUTTONING MY BLOUSES UP BEFORE HAND AND LEAVE THE TOP BUTTON UNBUTTONED; WHEN I'M READY TO PUT THEM ON, JUST SLIDE OVER MY HEAD, LIKE I WOULD DO A TEE SHIRT. I LOVE BUTTONED UP BLOUSES, AND DON'T WANT TO BE DEPRIVED OF WEARING THEM. I DO HAVE SEVERAL DECORATIVE TEE SHIRTS TOO, ALONG WITH NICE PULLOVER SOFT DRESSY SHELL TOPS. I HAVE OTHER THINGS I DO TO LIVE AS NORMAL AS I CAN WITH AN UNNORMAL DISEASE, B/C IT WILL 'FLIP THE SCRIPT' ON YOU AT ANY GIVEN DAY! I MOVE FORWARD DAILY, MANY TIMES AT A DIFFERENT PACE, BUT I'M MOVING! WE ARE ALWAYS ADAPTING, SORT OF LIKE A CHAMELEON(DID I SPELL THAT RIGHT)? IF NOT IT WASN'T THE FINGER, I USUALLY CAN'T FIGURE OUT WHERE THE E'S GO! SO, I DO WHAT I CAN AND DO AS THE SERENITY PRAYER. GOD GRANT ME THE SERENITY…..Y'ALL KNOW THAT ONE! 'TIL NEXT TIME LET'S KEEP MOVING FORWARD WHEN WE GET A 'BREAK' FROM THE FLARES AND WHATEVER COMES OUR WAY. I'VE LEARNED TO ROLL WITH THE PUNCHES AND WHEN THE PUNCHES LET UP, I PUNCH BACK!!!

  • Kelly Mack moderator author
    2 weeks ago

    Good for you Redbone! Love what you are saying! Also really happy that you are keeping up with your fashion even when buttons get in the way. 🙂 I have the same technique for blouses! I also do wear a lot of knits and prints as they are easier to get on. Keep on punching and thanks for the encouraging words! Best, Kelly (RheumatoidArthritis.net Team)

  • Frazzled
    1 month ago

    I totally get the “one more things” routine. It’s as if every time one thing improves, something has to get worse. For example, I was doing relatively well without much pain in my feet. We changed something, and now I have peripheral neuropathy, not caused by diabetes. So now I have to take a new supplement prescribed by a podiatrist, and then I have to have more PT and light therapy sessions – 2-3 a week. I was also given a new med (Lyrica) to try to make this better. This is also happening while I ma making a schedule shift at work, pushing my start time to 5:30am instead of 8 because I have a team that is global. Sure, my day ends at 1:30 or 2, but then I have to deal with all sorts of other appointments, etc. I feel like the more than gets put on me, the less I am able to cope. Then throw in pain, constant fatigue, and stiffness (even from sitting in a chair for 30 minutes), it becomes unmanageable. Add anything else and I may just fall. Thank the Good Lord that some bosses understand, and I have one of those now. Otherwise, I woudl have to change jobs or move again.

  • Kelly Mack moderator author
    2 weeks ago

    I really feel you, Frazzled! Changes can really throw me, especially if it means changes in my schedule and habits. Hoping that in the long run this will work out for the better for you? Very glad you have an understanding boss, as that really helps. Try to take it a step at a time as sounds like you’ve got a lot being thrown at you right now! Best, Kelly (RheumatoidArthritis.net Team)

  • miso
    1 month ago

    Hello Kelly, your description of symptoms seems a mirror image of mine’s /us.
    Even same stage of sleep study…did you find the sleep apnea machine helpful??
    I live alone so no helping hand by my side.
    God bless your progres.

  • Kelly Mack moderator author
    2 weeks ago

    Thanks Miso! Yes, I have found the sleep apnea machine really helpful. I’m a couple months in so can say the effects were not immediate but after sticking with it, have found my ability to rest much improved and less fatigue. Keep on at it. Hope you find some relief soon. Best, Kelly (RheumatoidArthritis.net Team)

  • Casmere
    1 month ago

    Kelly Mack: A great analogy for RA. It sure has it’s ups and downs the adding of new meds to increasing one. I am currently in a down spiral and have to double up on prednisone. I also have to do all the screening, again, for a biologic med to be added. I asked for this because of the increased joint pain and i didn’t up the prednisone myself as I would like to get off of it. But Dr told outright to go back up if I find increase in pain after reducing, which is on a monthly schedule do I am starting on rebuilding my jenga tower. Anyway enough about me, I am definitely not at your stage of this disease. I thoroughly enjoyed your article and all my best to you. You have been through so much within
    your life.
    My prayers and Blessing to you and everyone

    Carol aka Casmere

  • Kelly Mack moderator author
    2 weeks ago

    Thanks so much Carol. Sorry that your Jenga tower has been building! Hoping that you find some relief and more balance very soon. Perhaps a new medication routine would help, so sounds like you are on the path to make that happen. Keep us posted when you can. Hang in there–it is a struggle but you can do it! 🙂 Best, Kelly (RheumatoidArthritis.net Team)

  • Kacey
    1 month ago

    It’s so interesting that you used the phrase “one more thing” when talking about additional complications that come up in regards to your health issues because that’s the same thing I say when I get a new med or a new food sensitivity or something. It’s just “one more thing” and sometimes it does feel like if I have to deal with “one more thing” i’m going to lose the ability to deal with anything

  • Kelly Mack moderator author
    2 weeks ago

    Hi Kacey, Very well said! When you add “one more thing” to a big pile it definitely can feel overwhelming! Hang in there and know that you are not alone. Sometimes it helps me to take one moment (or one thing!) at a time to make it a tiny bit more manageable. Best, Kelly (RheumatoidArthritis.net Team)

  • Lawrence 'rick' Phillips
    1 month ago

    Kacey, often times I have found that things come up. Sometimes it seems like things snowball and other times, it can run smoothly for a long time.

    I hope your road smooths out and stays that way for a long time

  • Lawrence 'rick' Phillips
    2 months ago

    What a great analogy. I have lately been on Jenga pile myself. I hope and I feel better shortly.

  • Kelly Mack moderator author
    2 weeks ago

    Hi Rick, Sorry that you are playing the Jenga game! Hope you are feeling better and less challenged very soon. Rooting for you! Best, Kelly (RheumatoidArthritis.net Team)

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