The Calm After the Storm

The Calm After The Storm

Those of us living with rheumatoid arthritis/rheumatoid disease (RA/RD) can have our lives upturned at a moment’s notice by a flare of symptoms. While triggers and treatments can play a role in how often and how severe our flares are, unpredictability is a central characteristic of this disease. It’s typically very difficult to forecast when a flare will hit, which joints it will affect, and how long it will last.

When I flare, the severity can range from pain that makes it difficult to get through a routine day to pain so intense it is impossible to perform daily activities. It can be difficult to simply hold a glass of water or brush my teeth, much less walk from the parking lot up the staircase to my office, speak coherently at a meeting, or read my children a bedtime story.

Flares completely disrupt my calendar and my intentions. If I’m in a lot of pain I may be able to make it through the workday, but making it to a social outing is unthinkable. Even if I were to drag myself there, I wouldn’t have the energy to chat and mingle, wanting instead to search for a quiet corner to rest and hide. Events I’d previously looked forward to become shaded with dread and menace. What once seemed fun and merry becomes heavy and impossible.

A flare is like a storm raging through my body, raining down pain, gusting with inflammation, and flooding with fatigue. It ravages the landscape of my mood, leaving me feeling jaded, irritable, fearful, and guarded. Creating a wake of decimated plans, broken to-do lists, and damaged emotions, the storm of a flare upends normality with wreckage.

And then, like a storm, the flare passes.

When a flare is finally over, it feels like my life was held hostage and has now been released back to me. I can once again write a to-do list, make plans with family or friends, and think about how I want to spend my day, rather than wondering how I’ll get through it.

There is a pervasive gratitude throughout the moments of my day as I reflect on the flare that I’ve cleared. Thoughts run through my head such as, “Yesterday it hurt so much to drive my car” or “It’s already lunchtime and I haven’t even needed any pain relievers today” or “Maybe I’ll play a game with the kids before I start dinner.” The layers of loss that occur during a flare are lifted, and I’m grateful to have made it through to the other side.

But when will it strike again?

At the same time, I remain guarded, not knowing when the next flare will come. My husband might start discussing possible weekend plans, and I’ll say, “That sounds fun, but let’s see how I’m feeling.” I once again refer to my to-do list daily, but I section it into “must do” chores and “hope to” tasks. After a flare I must regain confidence in my body’s ability to go a few days in a row flare-free. With each day, I am more hopeful that the following day will include only my “regular day” levels of pain and fatigue, versus the intensity of symptoms that comes with a flare.

Thinking of this ebb and flow of pain, I’m reminded of childbirth. During each contraction in labor, one must focus solely on making it through. It is after the contraction releases that one can think about ice chips, exercises, and comfort measures. Flares are similar in that everything else falls to the background while I’m surviving one. However, in childbirth one knows there is an end to the pain, that eventually the baby will be born and the pain will subside. With RA/RD, there is no such timeline, and no sublime reward at the end. There is no way of knowing how many years of pain lie ahead, nor when the next flare will hit.

I am grateful each time I survive a flare. Yet I cautiously wonder whether it is the calm after the storm or only the eye of the hurricane, a brief reprieve before I’m walloped again. Even when the stormy flare has truly cleared, there’s always another one lurking in the distance. When living with RA/RD, it seems that hurricane season never truly comes to a close.

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

View Comments (12)
  • Wendy
    12 months ago

    I was thinking more about this today. I was thinking about how I need to ALWAYS be two weeks ahead in terms of my to do list – at home and work. I just never know when a flare will strike and I have two children in elementary school and am a Social Worker engaged in very deadline-sensitive practice. I have been creating a Home Binder so my family has critical info if they need to take over. Not that I’ll be unconscious, but hey, you can never be too prepared! I know that I have certainly WISHED to be unconscious in my worst flares. I’m now pretty well-managed on Enbrel and methotrexate, but Christmas has kicked my butt so far. I’m not sleeping enough, drinking enough water, preparing in advance to prevent crappy eating, etc. I have told all my closest friends that 2018 is “The Year of No”. Can you play Bunco with coworkers on a weeknight? NO! Can you volunteer to do something extra with Girl Scouts? NO! Will you volunteer for that extra on-call? NO! You get the idea.

  • Tamara Haag moderator author
    12 months ago

    Hi Wendy,

    Thanks for sharing! I think many of us can relate to the pressures you describe.

    I can relate so much, as I’m a mother of two young kids and a former School Social Worker (the stress was too much for me, as it ramped up my disease activity, so I’ve switched to a less intense job in schools), plus I continually try to do too much.

    A friend of mine who watches how busy I stay and how many health issues I have recently told me, “Tamara, everything that you’re doing is important, and your body is important too.”

    I took a deep breath hearing that. It is so easy to put everyone else’s needs before our own, especially when it comes to our children and the clients requiring social work assistance. However, pain is our body’s way of screaming at us that something isn’t right, and we need to care for ourselves just as we do for others. Therefore, I applaud your decision to have the “Year of No.” Say no to other things so that you can say yes to giving your body what it needs.

    (Btw, I’m writing to myself as I write this to you, as I fully recognize this is so much easier to say than to do. Luckily we have this online community so that we can all remind one another to prioritize self care.)

    Wishing you all the best, and a new year full of “no”! 🙂

  • Richard Faust moderator
    12 months ago

    Thanks for writing Wendy. Learning to say no can certainly be difficult. I truly think it is a learned skill. Seeing what you had to say about your binder, thought you might be interested in this article from one of our contributors on how to prepare for a flare: https://rheumatoidarthritis.net/living/prepare-flare/. She notes “Rest when you need to. You might have to beg out of social obligations, but hopefully your friends and family will understand.” My addition – hopefully they understand, but if they don’t that just might be on them. Wishing you the best. Richard (RheumatoidArthritis.net Team)

  • Tamara Haag moderator author
    12 months ago

    Thank you for sharing that prayer, Larry. It is spot on! Appreciatively, Tamara

  • sandymm
    12 months ago

    I am in the middle of a bad flare up right now, so this article hit home. I am so glad I joined this group. I don’t feel as alone any more.

  • Tamara Haag moderator author
    12 months ago

    Hi Sandymm,

    I hate to hear that you’re having a bad flare (I can relate!), but it makes my day to hear that something I’ve written has brought any measure of comfort to another person dealing with this disease. Please know that we are always here any time you have a question, concern, or experience you’d like to share. We’re all in this together.

    Wishing your current flare storm calms down soon,
    Tamara

  • scarlett19
    12 months ago

    Boy are you right on target with everything you said in this article. It actually feels good to know other people feel the same as you when we read these things. Thank you for sharing.

  • Tamara Haag moderator author
    12 months ago

    Hi Scarlett19,

    Thanks so much for your comment. I hate that so many of us have to live with the pain, fatigue, and swelling of RA and all the impact that has on our lives, but I too am glad that we can share with each other and know that we aren’t alone and that we’re each doing the best that we can.

    Please continue to share any time you feel so inclined.

    Thank you,
    Tamara

  • Wendy
    12 months ago

    I have often thought of the same comparison – labor versus a flare. I feel the pressure to do as much as possible when feeling well is overwhelming at times. I just never know when I’m gong to have to call in diseased (instead of “call in sick”).

  • Tamara Haag moderator author
    12 months ago

    Hi Wendy – Yes, “I have to take a disease day” is definitely more accurate! Thanks for sharing, as it’s helpful for all of us to know that others have similar experiences with the challenges we are contending with. Wishing you all the best, Tamara

  • sandymm
    12 months ago

    Larry, I am 79 and newly diagnosed. I like your prayer!

  • Larry Sawyer
    12 months ago

    now I lay me down to sleep
    I pray to the Lord my soul to take
    but if He deems that I must wake
    I pray to him my pain to keep

    Have had RA since1979
    I am now 75

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