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Conversation of the Week: Mitigating The Unpredictability of RA and Chronic Illness

Hi everyone! It's that time again - COTW! No, not Chickens Only Talking Wolves, its the Conversation of the Week! This time around we are digging into the unpredictability of living with rheumatoid arthritis, and how that can take a toll on a person.

Both mentally and physically, the "not knowing" part is one of the most difficult aspects of living with chronic illness and autoimmune disease. There have been multiple studies confirming just this - that people can adapt to regularly scheduled misery, but unexpected misery on a daily basis, well, that's a totally different animal and rheumatoid arthritis gives us that in heaps!

How do I manage the physical and mental stress of this "come what may" life? Well, I always have a full spate of pills on me. From RA meds to pain meds to heart meds - just in case I get caught out I'm good (ish). This helps not only physically but also as a mental "security blanket" that I can feel in my pocket. I use other tricks but, now it's your turn!

What do you think of the unpredictability of RA, and how do you manage it? 💡🤔

  1. Really good question ! After decades of living with RA I still find this a challenge! I try to leave space in my day for needing extra rest, but it's not always possible. Some days I just have to change my plans altogether. I try to regularly educate people in my life to say, "this is the plan, but my RA may have other ideas so bear with me if I need more time or to change things altogether." How can we better pace ourselves or prepare for the unpredictability? Best, Kelly

    1. Kelly Mack Exactly! It's difficult to explain to others even when you pre-warn them when you have to cancel last-minute. My friends have known for years and I know they still get wary sometimes! Thanks for sharing, keep on keepin' on, DPM

  2. This is a question that defines my life! For some reason, RA always seems to change. The pain meds are a must for me, as are the various wrist braces, heat pads, etc. that must follow me wherever I go. Have to have a tote bag or travel bag at this point for all my valuables.

    It's quite difficult. Alas.

    David ( Contributor/Moderator)

    1. Pain meds are a must for me as well as well as the braces, heat, cold, and others propping-up devices. I get it, you are not alone. It is quite difficult! Thanks for sharing, keep on keepin' on, DPM

  3. I have had a few months of reprieve which is shocking to me after my extreme disappointment with Methotrexate.
    When my family sees me doing things and not canceling plans they seem to think my RA is finally over.
    This week my rheumatoid is back. Folks wonder why. I don't wonder.
    Family was hoping I could go back to doing things I did before RA. They wonder why I am not willing to plan on going to the international quilt show. Last year I stayed home while the quilters left at 8am and did not return till after 8pm. I would be in an ambulance after a day like that
    I am weary of being a party pooper.
    I am tired of explaining I hope to just plateau but I don't think I will ever "get better".
    After a couple months of my baseline aches and pains but no flair even I was questioning if I just hallucinated 3 years of flairs and misery. Nope. It was not just a bad dream.
    I guess I am not dealing well with chronic illness 😕

    1. Yeah, I get it. It's like if you decide to finally go out on a good day, suddenly they think your flare or even your illness is now subsided. It's frustrating for sure. I also can maybe make one day of 12 hours IF I push it, but then I'm basically out of commission for the rest of the week, so it's a trade off (as it always is). Still, though, what ever way you are dealing with your illness is the best way for you. You are doing just fine, as we all are doing the best that we can. Peaks and valleys - that's our lives with RA and sometimes a peak pops up in the middle of a valley for absolutely no reason at all. Then we have to scale it and it stinks. You are not alone, trust me! 😊 Keep on keepin' on, DPM

    2. thank you. I could have written that.

  4. Thank you, ,
    Even I question myself as to why I don't "give it a try" Well when I take myself to the logical next step, it involves coming up with an exit plan like..
    Sure I will go but I will drive myself incase I have to leave early.
    Comments like that most often go over like a lead balloon.

    I don't have a handicap tag on my car
    I don't have or need an assistance device for walking
    I don't own an assistance device for mobility
    I do walk through the grocery store or department store

    All this equals that I am F I N E.

    Don't even get me started on how to explain fatigue. I can't. It just IS.

    Right now I think I need to learn how to cope with how I react to other people's responses and decide if they don't like how I need to handle RA that is not my problem.

    I am sounding bitter, even to myself. Honest I am not bitter, mostly sad.

    1. I am right there with you, except I only had a Total hip replacement, right hip. Even family think I am better buy they don't realize the pain I have in my hands wrist, feet and ankles. Let alone my knees and lefy hip. Why did I have corticosteroid injections in my right knee about 2 months ago and last week my left knee, and hip. Anyway, we get through these things.
      Blessings and Prayers

    2. I know how that feels. I call them “the blahs” and they come a few days every month or two. It can be difficult to be alone and have to deal with things that most people don’t want to or can’t understand. Still, though, don’t underestimate the fact that this website is full of people who are going though their own journey, many times this means walking some of the same paths as we do! Keep on keepin’ on, DPM

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