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An image of a person calling time out with their hands in the shape of a T.

I Call ‘Time Out’!

If you could call “time out” on your Rheumatoid Arthritis for 24 hours (with no repercussions the following day), how would you spend it?

I really wish we didn’t have a disease that plagued us every second of every minute of every hour of every day of our lives. I wouldn’t wish illness on anyone but there are some diseases (and I’m not talking chronic conditions) that cycle through and then disappear from view or feeling. Ours doesn’t. RA is a persistent little fellow that clings on for dear life and leaves destruction in its wake (very similar to a parasite!)

My wish list?

I rarely wish for things because I grew up learning I was the master of my own destiny (boy, was I wrong) but there is one thing I desire: a “time-out”. I can’t wish for RA’s eradication altogether because there is some genie rule against it but I could easily wish for a brief break from its woes.

Sitting down and actually thinking about what I would do with twenty-four pain- and medication free, full mobility, fear-free hours is actually really hard! After eight years of the constant reminder of this disease, living RA-free is hard to imagine.

The first thing that comes to mind is a really long nap. I don’t remember the last time I slept through the night, even though, generally speaking, my sleep hygiene is pretty good. Is that a waste of my 24 hours? I want to say yes and no because knowing me, I would sleep for a solid eight (if not more!). Yes, because that only leaves me 16 hours and no because we all know I need it!

But, really, what would I do? What would you do?

I would climb 30 routes for my 30th birthday. I would work on my bouldering skills and lead-climb without fear of fracturing my spine. I would hike part of the Appalachian Trail and revel in all my scrapes, bruises and sore muscles. I would go on a backpacking trip, kayak and carry my boat down to the river. I would…I’ve already run out of time haven’t I?

I would eat all the things. I would eat French fries and mashed potatoes without flaring. I would scarf down baked potatoes with everything on them without nausea. I would eat my favorite salty foods. I would eat all the chocolate and drink all my favorite coffee milkshakes without a care in the world.

I would take my dog for a long walk and tone my legs; I would brush my cats in one go with their favorite brush and not suffer from severe allergies. I would roughhouse with my puppy and play Tug-of-War until she tired out, which would take 24 hours on its own but I wouldn’t be in pain!

I would work a full eight-hour shift as a veterinary technician with no foot or back pain. I would learn a new language without the brain fog. I would sit out in the sun and read through an entire book without moving or breaking out in a rash. I would go on a road trip with all my pets and see the world.

RA won’t stop me

I am well aware I ran out of time somewhere along the Appalachian Trail but I was on a roll and pretended 24 hours was actually an infinite amount of time.

There’s nothing stopping me from doing all those things with Rheumatoid Arthritis. Sure, I have to make certain accommodations like giving myself more time than average to complete a task, taking frequent breaks or slathering my body in sunscreen but I can still do whatever I want.

I can do all these things with RA but it would be nice to live just one day without it. And, honestly, I’d be happy with just a normal, mundane one because one day without pain, stiffness, and disability sounds like a fantastic day, indeed.

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

  • Blade
    1 year ago

    I know what that feels like been going thru it 10 15 yrs I just suffer no one understands

  • Susie Que
    1 year ago

    Thank you for the article Monica. I’ve only been diagnosed for 5 years, in that 5 years, I have had 2 knee replacement surgeries, 2 major spinal surgeries, 2 cataract surgeries, 1 thumb joint replacement surgery and 1 more thumb joint replacement surgery in 3 weeks.
    I’m now limited as to what I can do, I can get past the pain, I keep my mind busy and it really helps. But to have 24 hours free of this horrific disease, I’d fly to Florida and see my son and soak up some ocean breeze and sun. It would be short but sweet.

  • Nina Winterbottom moderator
    1 year ago

    I love that idea, Susie! Soaking in the outdoors and also being with your son. Thank you for sharing your story with us. I’m glad you’re able to stay busy and keep your mind off things for the most part. That is a huge achievement. We’re happy to have you here. – Nina, RheumatoidArthritis.net Team

  • tryingharder
    1 year ago

    Thankyou Monica for the article, it’s nice to dream huh?, I’ve had r/a for ten years now and for some reason this year has been pure hell, ive been on every medication they make, are there some that stop the progression of r/a?, 3 day’s ago I was carrying my precious Lilly dog down the stairs, my ankle gave out and I fell to my side, 13 steps holding on to my little girl but tore up my elbow and shoulder on the way down, it’s not getting any easier for me, I think im starting to loose my eye sight?, does that go to with r/a?, im 52 and am slowly losing my job, I filed for social security and hope they can help me before I loose my house. Does it get any better? Im open to any suggestions, I feel like im sinking, please help.. Thankyou

  • Susie Que
    1 year ago

    I’m so sorry trying harder.
    When things get bad, like what you just went through, I focus on what makes me happy, I watch comedies, never the news. Forget about the housework, there’s no fairy’s coming at night to do it so relax it will be there when you feel better. I like to call it automatic pilot!

  • tryingharder
    1 year ago

    Okay thankyou

  • rockcandi
    1 year ago

    I imagine this all the time! I would spend the majority of the day alternating playing with my two year old son and cleaning and organizing my home. I would relish the chance to play with my son, running, jumping, crawling, sitting on the ground, etc w/o pain or taking many breaks. And I can’t stand the subdued way I have to clean my house one room per day (if I’m even able to accomplish that, most days I can only do one thing, like sweep the floor) so I would clean the way I did while I had a good remission in my young twenties. Then I’d go on a date with my husband, to eat first, then bowling, then to a nice hotel for husband and wife stuff! Then I’d sleep for a full 8 hours straight!

  • tckrd
    1 year ago

    It would be nice to have that 24 hours so I could remember what it was like before RD.

  • laurak
    1 year ago

    Hi Monica,

    Great post; thanks for sharing. I’m 23 and was diagnosed just last year, right after graduating college. I’d go out with my friends like I used to and stay out ALL night dancing! I’d eat all the food I love without flaring. I’d even wash the dishes without achy hands…

  • mcadwell
    1 year ago

    What would I do? I’d go dancing. And I’d clean my house. And I’d go hiking…and fishing…and swimming…and…and…I have too many ‘ands’

  • HeidiKat
    1 year ago

    After 28 years and 20 surgeries later, it really is hard to imagine being healthy. Our brains take care of us as we get used to what has become normal. If we could remember, we would grieve even more. When my wrist was fused, I thought I’d never get used to it, but our brains adjust, and I hardly think a out it anymore.
    That being said, if I have a 24 hour break, it would start with a nice long run with my 10th Border Collie like I used to. Then he’d learn the joy of the run like those before him.
    Thanks for your awesome blog and insight!

  • suann
    1 year ago

    If I had 24 hrs what would I do.. I have thought long and hard about this. So many things to think about.. I have to say clean clean and clean spotless to suit my own fancy…

  • flgranny64
    1 year ago

    Great article. I’d walk on the beach with my grandchildren. I’d eat a nice meal out with my son. I’d have wings and beer watching a game. I haven’t been able to do any of those things for 4 years.

  • BANelson
    1 year ago

    Oh, for just 24 hours with no meds, no pain, no required rest breaks! No fatigue! I would take Ozzie, my goldendoodle to an ocean beach (which means I leave Kansas for the day) I would let him run and swim with me and then we’d walk (barefoot!) with no orthotics– in the sand. Then we would walk through a botanical garden–and walk, and walk, and walk. I miss distance walking (2-4 miles a day, 7 days a week) with my dog. He misses it, too, but he never complains. Monica–I love your writing! Keep it up. I have a feeling it is therapeutic.

  • Monica Y. Sengupta moderator author
    1 year ago

    BANelson, thank you so much for your lovely and kind words!!! I am so glad you like my writing! It is therapeutic. I spent a long time hiding my RA from everyone and now I can contribute and help other people on their journey. I really appreciate that you like my articles!!

    Agreed on the beach wish. Can I just start by exclaiming “why is it so difficult to walk in the sand?!” Theoretically, it’s softer so less impact on the joints but somehow it always hurts more than just walking on pavement! It’s very confusing and I try to avoid it because I also don’t like sand in my shoes!

    Since you mentioned your Ozzie, I thought you might enjoy these articles: https://rheumatoidarthritis.net/living/how-animals-can-help/ https://rheumatoidarthritis.net/video/my-best-friend/

    I 100% know how my pets have positively affected my journey with RA and it sounds like Ozzie has done the same for you!

    Thank you so much again for the kind words and sharing on my article!! ~Monica

  • Mary Sophia Hawks moderator
    1 year ago

    Monica, thanks for a great article! I would go dancing all night. I miss that. The best part would be no fatigue or talking myself into getting out of bed.
    MS

  • Monica Y. Sengupta moderator author
    1 year ago

    I love this list!! And yes, don’t I know it…I lay in bed staring at the ceiling and wishing I didn’t have to attempt the sometimes impossible of waking up!

    Thanks for commenting, c7mv96! ~Monica

  • Richard Faust moderator
    1 year ago

    Hi c7mv96. My wife, Kelly Mack (a contributor here), might be right there with you on the dance floor. In this article she writes about how, even in her wheelchair, she loves to dance: https://rheumatoidarthritis.net/living/dancing-queen/. I’m sure she would relish the opportunity to do it with no repercussions. Best, Richard (RheumatoidArthritis.net Team)

  • Mary Sophia Hawks moderator
    1 year ago

    Richard,
    That’s great! I actually danced in my rollator once! Nobody was dancing and we had a great band. I dragged my rollator to the edge of the dance floor and started dancing!
    MS

  • 2mra
    1 year ago

    Awwww!! Only 24 hours Monica??

    I remember being in remission for 5+ years, then my Brother died and it all went away to total pain and fatigue. Back then I went into volunteering but for 24 hours, I would just run until I couldn’t run no more.

  • HeidiKat
    1 year ago

    I’m so sorry. I had that same experience. I was doing okay, and my only son was killed in Afghanistan at the age of 21. My health has taken a huge hit. Grief and stress are terrible triggers

  • Richard Faust moderator
    1 year ago

    Hi 2mra. You raise an interesting point when you mention coming out of remission when your brother passed – the role of stress in RA. This article from one of our contributors discusses “the stress circuit” and the science behind how stress impacts RA: https://rheumatoidarthritis.net/living/what-is-the-stress-circuit-and-why-we-need-to-care/. It is completely understandable that the loss of your brother could lead to your RA resurfacing and I am very sorry for your loss. Wishing you the best. Richard (RheumatoidArthritis.net Team)

  • Monica Y. Sengupta moderator author
    1 year ago

    2mra…I know! 24 hours is just not enough time. If I had three wishes could I ask for more time? I don’t know if that’s allowed. Genies have some weird strict rules.

    I am so sorry to hear about your brother. From my own personal experience with grief, I understand how the RD can flare up badly! May I ask, how do you manage flares when they arise?

    Thanks for commenting on my article!!

  • tckrd
    1 year ago

    Wow thank you for the all be it brief release to remember like a lost lover the way it was.

  • Monica Y. Sengupta moderator author
    1 year ago

    Love this analogy!! Thank you, tckrd!! ~Monica

  • Jo J
    1 year ago

    I would do a full hour of yoga and walk The Famous Potato Half Marathon, have a couple of beers and sleep through the night! Prior to RA, distance walking and yoga were an integral part of my life. I miss it! It’s possible I’m beginning to feel positive effects after 5 doses of Enbrel – so who knows???

  • Monica Y. Sengupta moderator author
    1 year ago

    Love the positivity, J0dspace!! If you’re feeling so good with the Enbrel maybe you can integrate yoga back into your routine? May I ask…Do you do a different type of yoga now?

    I love this list. Thank you so much for sharing!! ~Monica

  • Jo J
    1 year ago

    Thanks, Monica! I had Fibromyalgia for 20+ years prior, so I’ve always taken Gentle Yoga classes. In fact, I was able to go off all meds for FM with walking, yoga and good sleep hygiene for about 5 years. Then, an injury resulted in a hip replacement and accelerated the onset of RA. I don’t like “Gym Yoga”! Find a teacher who is knowledgeable about “Adaptive Yoga.” It is so beneficial! I’m slowing working it back in. My favorite DVD is “Yoga For Inflexible People” – it’s beyond me right now, but my goal is to get back to the DVD in the next few months. PT appts & home program are currently using up most my exercise time. If you’re really blessed, you can find a massage therapist who is a yoga teacher! Who could be more accepting about your body’s needs? Mine has helped me develop brief routines to use at home. Plus, on road trips, I take my mat and stop at a shady park and do a mini practice!

  • Dave
    1 year ago

    I told my wife just the other day that I would give a weeks worth of pay for just one day without something hurting. Oh, well life goes on and no use wishing for something we can’t have, huh???

  • Monica Y. Sengupta moderator author
    1 year ago

    I probably would too, Dave, me too!

    Fair point!! I guess for me personally, I just can’t seem to let go of the person I was before the RD.

    Thank you so much for commenting on my article!! ~Monica

  • kat-elton
    1 year ago

    Love, love, LOVE this article Monica- did you write it for me?

  • kat-elton
    1 year ago

    Love, love, LOVE this article Monica- did you write it for me?!! Seriously thanks. I have often had those same thoughts and right now I may just choose sleep!

  • Lawrence 'rick' Phillips moderator
    1 year ago

    I recall the second time I had an infusion for RA. I was so stiff I could barley walk a few days before. After the infusion I just got worse and worse. Finally on Saturday evening the stiffness just release. I ran through the house singing “Please Release Me” with made up lyrics. You know “please release me and let me skip again”.

    It is my new theme song. Of course in 4 weeks, I was back to “Living on a Crawl”

  • Monica Y. Sengupta moderator author
    1 year ago

    The first time I went in for the Orencia IV I hiked for almost 4 hours the next morning!!! I thought for the first time, maybe, just maybe, I will feel normal again…Too bad the Orencia doesn’t last the month though.

    Are you still on the same infusion?

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