The Real Work of RA: Slaying Demons  

The Real Work of RA: Slaying Demons  

In order to live well with any chronic disease, you have to actively work with it, and the key word in this sentence is WORK! My part-time job is JRA, and sometimes I’m called in for extra hours. Just like any job, the extra hours are usually required when I have something really fun planned. Take today for instance- halfway through Labor Day weekend and I knew I would be working at resting because if I didn’t, tomorrow I will be moving on fumes because my energy is so low. I know what I’m dealing with is what my fellow rheumatoidarthritis.net writer Tamara recently wrote about in her article, The Travel Hangover. I’ve been pushing hard because I’m moving to another town, I’ve been asking a lot of my body, and I’m experiencing an activity hangover.

An activity hangover = flu or flare

An activity hangover is much like the flu, or a flare-up, and I get them more often at certain times of the year. Summer, when I’m wanting to be exploring the Colorado mountains, and during the holidays, when I’m wanting to be at family gatherings. Both of these things take their toll, especially since I’m someone who hates being left out of anything. And for years, along with the activity hangover, came the doldrums. As my body crashed, so did my thoughts. I’d spend my time, “resting,” fuming at my body, upset with it and with how it interferes with my life. I’d bemoan the fact that I was in the prime of my life and I couldn’t even make it through a weekend of fun without suffering for it.

You can imagine how well that resting actually went. It turned me into a resentful, wound-up, mess. My body would eventually feel better but my mind just kept working itself up. After years of doing this, I realized that if I continued beating myself up every time my body wasn’t doing well, the disease was getting the best of me. Enough was enough, I needed to figure out a new way of doing things.

The demons we fight

Every one of us who lives with RA will have demons to deal with along with swollen joints and severe pain/fatigue. My demons come out when my body is in an activity hangover. It’s the time I sit and stew over the losses I’ve suffered along with the pain. The experiences I miss out on, the opportunities I have to say no to, the lack of the children of my own, all run through my mind as I stare at my offending joints. For me, altering my diet or doing my daily exercises aren’t hard, but resting is. I come from a family of energizer bunnies, hard workers, and high performers. The idea of sitting down with a pot of tea and watching a movie in the afternoon is practically slanderous and makes me feel like a lazy bum, especially if I’m watching people buzz with activity around me.

The key is not to compare

Comparing myself to an impossible self-standard is like shooting myself in the foot. I knew this, and I knew that I needed a new standard with which to compare. My husband lives with chronic pain as well, and for the past five years, I’ve had a resting buddy. This has helped my state of mind quite a bit because when he joins me I’m no longer left out. But I can’t always ask someone else to sit with me when I’m in rest mode.

Learning how to truly rest

So, I decided to work harder at learning how to truly rest.  For me, life changes first happen with an attitude shift. I needed to shift away from thinking about all of the things I couldn’t do, and instead shift into enjoying the rest my body requires. It’s taken a while to get there, especially since resting during a flare can be laughable if it includes increased pain. But over time I’ve realized that there are books I can read, crafts I can do, movies to watch, friends to talk to, and meditation music to enjoy.

Now, whenever I hear about an interesting book or movie I make a note. I save them for activity hangover days so I’ll actually have something to look forward to. And it’s working. Today, I’m drinking tea, writing, and looking forward to lying down and listening to the audiobook I picked out last week. My activity hangover day can actually be enjoyable. I’m slaying my dragon. I know that by improving my emotional health around my JRA, I’m also giving myself a better life even of the JRA symptoms never improve. And having done the work to tame this dragon, I will be better able to do it the next time one shows up.

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 (10)
  • tryingharder
    6 months ago

    Great article kat., I wanted to comment on Vicki d , pleas don’t get down on your self about things you can’t do anymore, or at least they are harder to do, I wrote a comment just like what your feeling not long ago and the staff here picked up on it and what they said made sense and was so helpful, saying, enjoy the things you can do now, and basically saying, don’t put so much on your plate at one time and expect to get it all done, just be thankful for being able to do part, realizing this is me now and some days are better than others, God bless you

  • kat-elton author
    6 months ago

    Thanks Tryingharder! I couldn’t have said it better myself. Such good advice. Have a wonderful day!

  • Duff
    6 months ago

    Thank you for sharing this Kat. Very helpful.

    I work in sales and spend a LOT of time in car, covering 2 States. All the “windshield time takes a toll on my body.
    Haven’t felt I can even tell my employer. I have to be out seeing my customers and looking for prospects. Not sure my employer would understand, my need to rest when my RA is acting up.
    Not sure how long I can keep up in this job with the travel required to be successful. Weighing on me. Not sure what else I can do that would have same income/benefits.
    Really sucks that we al have to deal with this awful disease. But, glad this site is here …so, we can all read and know …we’re not alone.
    Thank you.

  • qejm0g
    6 months ago

    Great article-timely too. As I sit here rocking my 10mth old grand daughter to sleep, I’ve been thinking about this concept. I answered my daughter’s request to help her for a month while she and her family transition from maternity leave to work full time. I’m away from home, sleeping short hrs in a hard bed, lifting, pushing, playing, struggling with a behemoth stroller. And while my mind wouldn’t trade this time for anything,my RA demon is beginning to show its ugly self! I started back on prednisone 2 nights ago. My husband said to me ‘please take it easy! I don’t want you coming back and taking 3 weeks to recuperate!’ Which is exactly what happened after our last grandkids vacation! I had resp infection, a UTI and a flare at the same time! A big chunk of July went missing!
    Active resting may be the answer for the rest of my stay! Thank you again!

  • VickyD
    6 months ago

    This is a great read, sometimes I get so down on myself for my inability to do what I think I should. Thank you for sharing!

  • floyd2018
    6 months ago

    Thanks Kat for your article. It makes me realize that it is okay to take time out, it has been hard since I still work a full time job. I also realize that I do have a disease and that I am not lazy, that’s what my ex boyfriend used to tell me, glad that part of my life has changed. Moving on to better things and I am getting better at managing my RA. It’s been 2-1/2 years and a long road. Thanks again for your inspiration!

  • Mary Sophia Hawks moderator
    6 months ago

    Kat, what a great article! I’m impressed with how you are slaying your dragon.
    I have to admit, when I was first diagnosed, I was relieved to have an excuse to rest! Extreme fatigue was constant for me until my 5th RA med. I do have to remind myself that it’s okay to rest. Tonight, I am meeting with my Professional Women After Hours Group. We only meet once a month, so it’s a reasonable pleasure. Other nights, I am on the couch or my bed.
    MS

  • Jo J
    6 months ago

    I appreciate reading about the concept of “active resting”. Reading yours and others comments on that has helped me be able to actually do more of what I want to do. I’m learning the signal of when a rest day is needed. I schedule at least one full day post travel to recuperate. In fact, today is day 4 of 7 in Bucerias, MX. I’ve had some great days pool and beach side. When my hips and ankles bother me, I hit the pool so the ocean wave activity doesn’t fatigue me. I do my yoga in the early morning shade on the beach. This morning I am rejuvenating by staying indoors, with air conditioning and an incredible ocean view. I know that later this afternoon, this evening and tomorrow will be all the more fun because of it. I am better at selecting activities I truly want to do from other’s, “You have to…”

  • betharooski
    6 months ago

    Your article is very true! I never knew that I would constantly think about what to do, eat, move and live. I took a moment to daydream of when I didn’t feel my body move and my mind was more clear. We all get encouragement or get a safe place to vent here. I am thankful for the writers and readers. This place has helped my brain and body a lot!

  • Jo J
    6 months ago

    “I took a moment…”

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